2013 Alzheimer’s diseAse fActs And figures includes A speciAl report on

long-distAnce cAregivers

1 in 3 seniors dies with Alzheimer’s or Another dementiA.

out-of-pocket expenses for long-distAnce cAregivers Are neArly twice As much As

locAl cAregivers.

Alzheimer’s diseAse is the sixth-leAding cAuse of deAth.

in 2012, 15.4 million cAregivers provided An estimAted 17.5 billion hours of unpAid cAre,

vAlued At more thAn $216 billion.

Alzheimer’s Association, 2013 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 9, Issue 2.

2013 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common type of dementia, as well as other dementias. Background and context for interpretation of the data are contained in the Overview. This information includes definitions of the various types of dementia and a summary of current knowledge about Alzheimer’s disease. Additional sections address prevalence, mortality, caregiving and use and costs of care and services. The Special Report focuses on long-distance caregivers of people with Alzheimer’s disease and other dementias.

about this report

1 2013 Alzheimer’s Disease Facts and Figures

specific informAtion in this yeAr’s Alzheimer’s DiseAse FActs AnD Figures includes:

•Proposednewcriteriaandguidelinesfordiagnosing

Alzheimer’s disease from the National Institute on

Aging and the Alzheimer’s Association.

•OverallnumberofAmericanswithAlzheimer’s

disease nationally and for each state.

•ProportionofwomenandmenwithAlzheimer’sand

other dementias.

•EstimatesoflifetimeriskfordevelopingAlzheimer’s

disease.

•Numberoffamilycaregivers,hoursofcareprovided,

economic value of unpaid care nationally and for each

state, and the impact of caregiving on caregivers.

•NumberofdeathsduetoAlzheimer’sdisease

nationally and for each state, and death rates by age.

•Useandcostsofhealthcare,long-termcareand

hospice care for people with Alzheimer’s disease and

other dementias.

•Numberoflong-distancecaregiversandthespecial

challenges they face.

The Appendices detail sources and methods used

to derive data in this report.

This document frequently cites statistics that apply

to individuals with all types of dementia. When

possible, specific information about Alzheimer’s

disease is provided; in other cases, the reference

may be a more general one of “Alzheimer’s disease

and other dementias.”

The conclusions in this report reflect currently

available data on Alzheimer’s disease. They are the

interpretations of the Alzheimer’s Association.

2 Contents 2013 Alzheimer’s Disease Facts and Figures

overview of Alzheimer’s diseAse

Dementia: Definition and Specific Types 5

Alzheimer’s Disease 5

Symptoms of Alzheimer’s Disease 5

Diagnosis of Alzheimer’s Disease 6

AModernDiagnosisofAlzheimer’sDisease:ProposedNewCriteriaandGuidelines 8

ChangesintheBrainThatAreAssociatedwithAlzheimer’sDisease 10

GeneticMutationsThatCauseAlzheimer’sDisease 10

Risk Factors for Alzheimer’s Disease 11

Treatment of Alzheimer’s Disease 13

prevAlence

PrevalenceofAlzheimer’sDiseaseandOtherDementias 15

Incidence and Lifetime Risk of Alzheimer’s Disease 17

EstimatesoftheNumberofPeoplewithAlzheimer’sDisease,byState 18

Looking to the Future 19

mortAlity

Deaths from Alzheimer’s Disease 24

PublicHealthImpactofDeathsfromAlzheimer’sDisease 25

State-by-StateDeathsfromAlzheimer’sDisease 27

Death Rates by Age 27

Duration of Illness from Diagnosis to Death 27

contents

3 2013 Alzheimer’s Disease Facts and Figures Contents

cAregiving

UnpaidCaregivers 29

WhoAretheCaregivers? 29

EthnicandRacialDiversityinCaregiving 29

CaregivingTasks 30

DurationofCaregiving 31

HoursofUnpaidCareandEconomicValueofCaregiving 32

ImpactofAlzheimer’sDiseaseCaregiving 32

InterventionsThatMayImproveCaregiverOutcomes 37

PaidCaregivers 39

use And costs of heAlth cAre, long-term cAre And hospice

TotalPaymentsforHealthCare,Long-TermCareandHospice 41

UseandCostsofHealthCareServices 42

UseandCostsofLong-TermCareServices 46

Out-of-PocketCostsforHealthCareandLong-TermCareServices 51

UseandCostsofHospiceCare 51

ProjectionsfortheFuture 51

speciAl report: long-distAnce cAregivers

DefinitionandPrevalence 53

FactorsInfluencingGeographicSeparation 54

Roles 54

UniqueChallenges 55

Interventions 56

Trends 57

Conclusions 57

Appendices

EndNotes 58

References 61

overview of Alzheimer’s diseAse

Alzheimer’s diseAse is the

most common type of dementiA.

NO.

5

dementiA: definition And specific types

Physiciansoftendefinedementiabasedonthecriteria

given in the Diagnostic and Statistical Manual of Mental

Disorders, Fourth Edition (DSM-IV).(1) To meet DSM-IV

criteria for dementia, the following are required:

•Symptomsmustincludedeclineinmemoryand in

at least one of the following cognitive abilities:

1) Ability to speak coherently or understand spoken

or written language.

2)Abilitytorecognizeoridentifyobjects,assuming

intact sensory function.

3) Ability to perform motor activities, assuming

intact motor abilities and sensory function and

comprehension of the required task.

4)Abilitytothinkabstractly,makesoundjudgments

and plan and carry out complex tasks.

•Thedeclineincognitiveabilitiesmustbesevere

enough to interfere with daily life.

InMay2013,theAmericanPsychiatricAssociationis

expected to release DSM-5. This new version of DSM

is expected to incorporate dementia into the diagnostic

categoryofmajorneurocognitivedisorder.

To establish a diagnosis of dementia using DSM-IV, a

physician must determine the cause of the individual’s

symptoms. Some conditions have symptoms that mimic

dementia but that, unlike dementia, may be reversed

with treatment. An analysis of 39 articles describing

5,620peoplewithdementia-likesymptomsreportedthat

9 percent had potentially reversible dementia.(2)Common

causes of potentially reversible dementia are depression,

delirium, side effects from medications, thyroid

problems, certain vitamin deficiencies and excessive use

of alcohol. In contrast, Alzheimer’s disease and other

dementias are caused by damage to neurons that cannot

be reversed with current treatments.

When an individual has dementia, a physician must

conduct tests (see Diagnosis of Alzheimer’s Disease,

page 6) to identify the form of dementia that is causing

symptoms. Different types of dementia are associated

with distinct symptom patterns and brain abnormalities,

asdescribedinTable1.However,increasingevidence

fromlong-termobservationalandautopsystudies

indicates that many people with dementia have brain

abnormalities associated with more than one type of

dementia.(3-7)This is called mixed dementia and is most

often found in individuals of advanced age.

2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

Alzheimer’s diseAse

Alzheimer’s disease was first identified more than

100 years ago, but research into its symptoms, causes,

risk factors and treatment has gained momentum only in

the last 30 years. Although research has revealed a great

deal about Alzheimer’s, the precise changes in the brain

that trigger the development of Alzheimer’s, and the

order in which they occur, largely remain unknown. The

only exceptions are certain rare, inherited forms of the

disease caused by known genetic mutations.

Symptoms of Alzheimer’s Disease

Alzheimer’s disease affects people in different ways. The

most common symptom pattern begins with a gradually

worsening ability to remember new information. This

occurs because the first neurons to die and malfunction

are usually neurons in brain regions involved in forming

new memories. As neurons in other parts of the brain

malfunction and die, individuals experience other

difficulties. The following are common symptoms of

Alzheimer’s:

•Memorylossthatdisruptsdailylife.

•Challengesinplanningorsolvingproblems.

Alzheimer’s disease is the most common type of dementia. “Dementia” is an umbrella term describing a variety of diseases and conditions that develop when nerve cells in the brain (called neurons) die or no longer function normally. The death or malfunction of neurons causes changes in one’s memory, behavior and ability to think clearly. In Alzheimer’s disease, these brain changes eventually impair an individual’s ability to carry out such basic bodily functions as walking and swallowing. Alzheimer’s disease is ultimately fatal.

6 Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures

•Difficultycompletingfamiliartasksathome,

at work or at leisure.

•Confusionwithtimeorplace.

•Troubleunderstandingvisualimagesand

spatial relationships.

•Newproblemswithwordsinspeakingorwriting.

•Misplacingthingsandlosingtheabilityto

retrace steps.

•Decreasedorpoorjudgment.

•Withdrawalfromworkorsocialactivities.

•Changesinmoodandpersonality.

For more information about the warning signs of

Alzheimer’s, visit www.alz.org/10signs.

Individuals progress from mild Alzheimer’s disease to

moderate and severe disease at different rates. As the

disease progresses, the individual’s cognitive and

functional abilities decline. In advanced Alzheimer’s,

people need help with basic activities of daily living

(ADLs), such as bathing, dressing, eating and using the

bathroom. Those in the final stages of the disease lose

their ability to communicate, fail to recognize loved ones

andbecomebed-boundandreliantonaround-the-clock

care. When an individual has difficulty moving because

of Alzheimer’s disease, they are more vulnerable to

infections, including pneumonia (infection of the lungs).

Alzheimer’s-relatedpneumoniaisoftenacontributing

factor to the death of people with Alzheimer’s disease.

Diagnosis of Alzheimer’s Disease

A diagnosis of Alzheimer’s disease is most commonly

made by an individual’s primary care physician. The

physician obtains a medical and family history, including

psychiatric history and history of cognitive and behavioral

changes. The physician also asks a family member or

other person close to the individual to provide input. In

addition, the physician conducts cognitive tests and

physical and neurologic examinations and may request

that the individual undergo magnetic resonance imaging

(MRI) scans. MRI scans can help identify brain changes,

such as the presence of a tumor or evidence of a stroke,

that could explain the individual’s symptoms.

Alzheimer’s disease

Vascular dementia

Mostcommontypeofdementia;accountsforanestimated60to80percentofcases.

Difficulty remembering names and recent events is often an early clinical symptom; apathy and depression

arealsooftenearlysymptoms.Latersymptomsincludeimpairedjudgment,disorientation,confusion,behavior

changes and difficulty speaking, swallowing and walking.

New criteria and guidelines for diagnosing Alzheimer’s were proposed in 2011. They recommend that Alzheimer’s

diseasebeconsideredadiseasethatbeginswellbeforethedevelopmentofsymptoms(pages8–9).

Hallmarkbrainabnormalitiesaredepositsoftheproteinfragmentbeta-amyloid(plaques)andtwistedstrandsof

the protein tau (tangles) as well as evidence of nerve cell damage and death in the brain.

Previouslyknownasmulti-infarctorpost-strokedementia,vasculardementiaislesscommonasasolecause

of dementia than is Alzheimer’s disease.

Impairedjudgmentorabilitytomakeplansismorelikelytobetheinitialsymptom,asopposedtothememory

loss often associated with the initial symptoms of Alzheimer’s.

Vasculardementiaoccursbecauseofbraininjuriessuchasmicroscopicbleedingandbloodvesselblockage.

Thelocationofthebraininjurydetermineshowtheindividual’sthinkingandphysicalfunctioningareaffected.

In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s disease (and vice

versa). That practice is no longer considered consistent with pathologic evidence, which shows that the brain

changes of both types of dementia can be present simultaneously. When any two or more types of dementia

are present at the same time, the individual is considered to have “mixed dementia.”

Type of Dementia Characteristics

TABLe 1 COMMON TYPeS OF DeMeNTIA AND TheIR TYPICAL ChARACTeRISTICS

7 2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

PeoplewithDLBhavesomeofthesymptomscommoninAlzheimer’s,butaremorelikelythanpeoplewith

Alzheimer’stohaveinitialorearlysymptomssuchassleepdisturbances,well-formedvisualhallucinations,

and muscle rigidity or other parkinsonian movement features.

Lewybodiesareabnormalaggregations(orclumps)oftheproteinalpha-synuclein.Whentheydevelopin

apartofthebraincalledthecortex,dementiacanresult.Alpha-synucleinalsoaggregatesinthebrainsof

peoplewithParkinson’sdisease,buttheaggregatesmayappearinapatternthatisdifferentfromDLB.

ThebrainchangesofDLBalonecancausedementia,ortheycanbepresentatthesametimeasthebrain

changes of Alzheimer’s disease and/or vascular dementia, with each entity contributing to the development

of dementia. When this happens, the individual is said to have “mixed dementia.”

IncludesdementiassuchasbehavioralvariantFTLD,primaryprogressiveaphasia,Pick’sdiseaseand

progressive supranuclear palsy.

Typical symptoms include changes in personality and behavior and difficulty with language.

Nerve cells in the front and side regions of the brain are especially affected. No distinguishing microscopic

abnormality is linked to all cases.

The brain changes of behavioral variant FTLD may be present at the same time as the brain changes of

Alzheimer’s, but people with behavioral variant FTLD generally develop symptoms at a younger age

(at about age 60) and survive for fewer years than those with Alzheimer’s.

CharacterizedbythehallmarkabnormalitiesofAlzheimer’sandanothertypeofdementia—mostcommonly,

vasculardementia,butalsoothertypes,suchasDLB.

Recent studies suggest that mixed dementia is more common than previously thought.

AsParkinson’sdiseaseprogresses,itoftenresultsinaseveredementiasimilartoDLBorAlzheimer’s.

Problemswithmovementareacommonsymptomearlyinthedisease.

Alpha-synucleinaggregatesarelikelytobegininanareadeepinthebraincalledthesubstantianigra.The

aggregates are thought to cause degeneration of the nerve cells that produce dopamine.

TheincidenceofParkinson’sdiseaseisaboutone-tenththatofAlzheimer’sdisease.

Rapidly fatal disorder that impairs memory and coordination and causes behavior changes.

Results from an infectious misfolded protein (prion) that causes other proteins throughout the brain to

misfold and thus malfunction.

VariantCreutzfeldt-Jakobdiseaseisbelievedtobecausedbyconsumptionofproductsfromcattleaffected

by mad cow disease.

Symptoms include difficulty walking, memory loss and inability to control urination.

Causedbythebuildupoffluidinthebrain.

Cansometimesbecorrectedwithsurgicalinstallationofashuntinthebraintodrainexcessfluid.

Dementia with Lewy bodies (DLB)

Frontotemporal lobar degeneration (FTLD)

Mixed dementia

Parkinson’s disease

Creutzfeldt- Jakob disease

Normal pressure hydrocephalus

Type of Dementia Characteristics

TABLe 1 (cont.) COMMON TYPeS OF DeMeNTIA AND TheIR TYPICAL ChARACTeRISTICS

8

These criteria and guidelines updated

diagnostic criteria and guidelines

publishedin1984bytheAlzheimer’s

Association and the National Institute

of Neurological Disorders and Stroke.

In 2012, the NIA and the Alzheimer’s

Association also proposed new

guidelines to help pathologists

describe and categorize the brain

changes associated with Alzheimer’s

disease and other dementias.(12)

It is important to note that these are

proposed criteria and guidelines. More

research is needed, especially research

about biomarkers, before the criteria

and guidelines can be used in clinical

settings, such as in a doctor’s office.

differences between the

originAl And new criteriA

The1984diagnosticcriteriaand

guidelines were based chiefly on a

doctor’sclinicaljudgmentaboutthe

cause of an individual’s symptoms,

taking into account reports from the

individual, family members and friends;

results of cognitive tests; and general

neurological assessment. The new

criteria and guidelines incorporate two

notable changes:

(1) They identify three stages of

Alzheimer’s disease, with the first

occurring before symptoms such as

memory loss develop. In contrast, for

Alzheimer’s disease to be diagnosed

usingthe1984criteria,memoryloss

and a decline in thinking abilities severe

enough to affect daily life must have

already occurred.

(2) They incorporate biomarker tests.

A biomarker is a biological factor that

can be measured to indicate the

presence or absence of disease, or the

risk of developing a disease. For

example, blood glucose level is a

biomarker of diabetes, and cholesterol

level is a biomarker of heart disease

risk. Levels of certain proteins in fluid

(forexample,levelsofbeta-amyloid

and tau in the cerebrospinal fluid and

blood) are among several factors being

studied as possible biomarkers for

Alzheimer’s.

the three stAges of Alzheimer’s

diseAse proposed by the new

criteriA And guidelines

The three stages of Alzheimer’s

disease proposed by the new criteria

and guidelines are preclinical

Alzheimer’s disease, mild cognitive

impairment(MCI)duetoAlzheimer’s

disease, and dementia due to

Alzheimer’s disease. These stages are

different from the stages now used to

describe Alzheimer’s. The 2011 criteria

propose that Alzheimer’s disease

begins before the development of

symptoms, and that new technologies

have the potential to identify brain

changes that precede the development

ofsymptoms.Usingthenewcriteria,

an individual with these early brain

changes would be said to have

preclinicalAlzheimer’sdiseaseorMCI

due to Alzheimer’s, and those with

symptoms would be said to have

dementia due to Alzheimer’s disease.

Dementia due to Alzheimer’s would

encompass all stages of Alzheimer’s

disease commonly described today,

from mild to moderate to severe.

Preclinical Alzheimer’s disease—

In this stage, individuals have

measurable changes in the brain,

cerebrospinal fluid and/or blood

(biomarkers) that indicate the earliest

signs of disease, but they have not yet

developed symptoms such as memory

loss. This preclinical or presymptomatic

stage reflects current thinking that

Alzheimer’s-relatedbrainchangesmay

begin 20 years or more before

symptoms occur. Although the new

criteria and guidelines identify

A modern diAgnosis of Alzheimer’s diseAse: proposed new criteriA And guidelines

in 2011, the nAtionAl institute on Aging (niA)

And the Alzheimer’s AssociAtion proposed

new criteriA And guidelines for diAgnosing

Alzheimer’s diseAse.(8-11)

Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures

9

preclinical disease as a stage of

Alzheimer’s, they do not establish

diagnostic criteria that doctors can use

now. Rather, they state that additional

research on biomarker tests is needed

before this stage of Alzheimer’s can be

diagnosed.

MCI due to Alzheimer’s disease—

IndividualswithMCIhavemildbut

measurable changes in thinking

abilities that are noticeable to the

person affected and to family members

and friends, but that do not affect the

individual’s ability to carry out everyday

activities. Studies indicate that as many

as 10 to 20 percent of people age 65

orolderhaveMCI.(13-15) As many as

15percentofpeoplewhoseMCI

symptoms cause them enough

concern to contact their doctor’s office

for an exam go on to develop dementia

each year. Nearly half of all people who

havevisitedadoctoraboutMCI

symptoms will develop dementia in

three or four years.(16)

WhenMCIisidentifiedthrough

community sampling, in which

individuals in a community who meet

certain criteria are assessed regardless

of whether they have memory or

cognitive complaints, the estimated

rate of progression to Alzheimer’s is

slightlylower—upto10percentper

year.(17) Further cognitive decline is

more likely among individuals whose

MCIinvolvesmemoryproblemsthan

amongthosewhoseMCIdoesnot

involve memory problems. Over one

year,mostindividualswithMCIwho

are identified through community

sampling remain cognitively stable.

Some, primarily those without memory

problems, experience an improvement

in cognition or revert to normal

cognitive status.(18) It is unclear why

somepeoplewithMCIdevelop

dementia and others do not. When an

individualwithMCIgoesontodevelop

dementia, many scientists believe the

MCIisactuallyanearlystageofthe

particular form of dementia, rather than

a separate condition.

Once accurate biomarker tests for

Alzheimer’s have been identified, the

new criteria and guidelines recommend

biomarkertestingforpeoplewithMCI

to learn whether they have brain

changes that put them at high risk of

developing Alzheimer’s disease and

other dementias. If it can be shown

that changes in the brain, cerebrospinal

fluid and/or blood are caused by

physiologic processes associated with

Alzheimer’s, the new criteria and

guidelines recommend a diagnosis of

MCIduetoAlzheimer’sdisease.

Dementia due to Alzheimer’s

disease—Thisstageischaracterized

by memory, thinking and behavioral

symptoms that impair a person’s ability

to function in daily life and that are

causedbyAlzheimer’sdisease-related

brain changes.

biomArker tests

The new criteria and guidelines

identify two biomarker categories:

(1) biomarkers showing the level of

beta-amyloidaccumulationinthebrain

and (2) biomarkers showing that

neuronsinthebrainareinjuredor

actually degenerating.

Many researchers believe that future

treatments to slow or stop the

progression of Alzheimer’s disease and

preserve brain function (called

“disease-modifying”treatments)will

be most effective when administered

duringthepreclinicalandMCIstages

ofthedisease.Biomarkertestswillbe

essential to identify which individuals

are in these early stages and should

receivedisease-modifyingtreatment.

They also will be critical for monitoring

the effects of treatment. At this time,

however, more research is needed to

validate the accuracy of biomarkers and

better understand which biomarker

test or combination of tests is most

effective in diagnosing Alzheimer’s

disease. The most effective test or

combination of tests may differ

depending on the stage of the disease

and the type of dementia.(19)

2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

10

Changes in the Brain That Are Associated with Alzheimer’s Disease

Many experts believe that Alzheimer’s, like other

common chronic diseases, develops as a result of

multiple factors rather than a single cause. In

Alzheimer’s, these multiple factors are a variety of

brain changes that may begin 20 or more years before

symptoms appear. Increasingly, the time between the

initial brain changes of Alzheimer’s and the symptoms

of advanced Alzheimer’s is considered by scientists to

represent the “continuum” of Alzheimer’s. At the start

of the continuum, the individual is able to function

normally despite these brain changes. Further along

the continuum, the brain can no longer compensate for

the neuronal damage that has occurred, and the

individual shows subtle decline in cognitive function.

In some cases, physicians identify this point in the

continuumasMCI.Towardtheendofthecontinuum,

the damage to and death of neurons is so significant

that the individual shows obvious cognitive decline,

including symptoms such as memory loss or confusion

as to time or place. At this point, physicians following

the1984criteriaandguidelinesforAlzheimer’swould

diagnose the individual as having Alzheimer’s disease.

The 2011 criteria and guidelines propose that the entire

continuum,notjustthesymptomaticpointsonthe

continuum, represents Alzheimer’s. Researchers

continue to explore why some individuals who have

brain changes associated with the earlier points of the

continuum do not go on to develop the overt

symptoms of the later points of the continuum.

These and other questions reflect the complexity of

the brain. A healthy adult brain has 100 billion neurons,

each with long, branching extensions. These

extensions enable individual neurons to form

specialized connections with other neurons. At such

connections, called synapses, information flows in tiny

chemical pulses released by one neuron and detected

by the receiving neuron. The brain contains about 100

trillion synapses. They allow signals to travel rapidly

through the brain’s circuits, creating the cellular basis

of memories, thoughts, sensations, emotions,

Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures

movements and skills. Alzheimer’s disease interferes

with the proper functioning of neurons and synapses.

Among the brain changes believed to contribute to the

development of Alzheimer’s are the accumulation of

theproteinbeta-amyloidoutside neurons in the brain

(calledbeta-amyloidplaques)andtheaccumulationof

an abnormal form of the protein tau inside neurons

(called tau tangles). In Alzheimer’s disease, information

transfer at synapses begins to fail, the number of

synapses declines, and neurons eventually die. The

accumulationofbeta-amyloidisbelievedtointerfere

withtheneuron-to-neuroncommunicationatsynapses

and to contribute to cell death. Tau tangles block the

transport of nutrients and other essential molecules in

the neuron and are also believed to contribute to cell

death. The brains of people with advanced Alzheimer’s

show dramatic shrinkage from cell loss and

widespread debris from dead and dying neurons.

Genetic Mutations That Cause Alzheimer’s Disease

The only known cause of Alzheimer’s is genetic

mutation—anabnormalchangeinthesequenceof

chemical pairs inside genes. A small percentage of

Alzheimer’s disease cases, probably fewer than

1 percent, are caused by three known genetic

mutations. These mutations involve the gene for the

amyloid precursor protein and the genes for the

presenilin 1 and presenilin 2 proteins. Inheriting any of

these genetic mutations guarantees that an individual

will develop Alzheimer’s disease. In such individuals,

disease symptoms tend to develop before age 65,

sometimesasearlyasage30.Peoplewiththese

genetic mutations are said to have “dominantly

inherited” Alzheimer’s.

The development and progression of Alzheimer’s in

these individuals is of great interest to researchers, as

the changes occurring in their brains also occur in

individualswiththemorecommonlate-onset

Alzheimer’s disease (in which symptoms develop at

age 65 or older). Future treatments that are effective in

people with dominantly inherited Alzheimer’s may

2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease 11

provide clues to effective treatments for people with

late-onsetdisease.

The Dominantly Inherited Alzheimer Network (DIAN) is

a worldwide network of research centers investigating

disease progression in people with a gene for

dominantly inherited Alzheimer’s who have not yet

developed symptoms. DIAN researchers have found a

pattern of brain changes in these individuals. The

patternbeginswithdecreasedlevelsofbeta-amyloidin

thecerebrospinalfluid(CSF,thefluidsurroundingthe

brain and spinal cord). This is followed by increased

levelsoftheproteintauinCSFandincreasedlevelsof

beta-amyloidinthebrain.Asthediseaseprogresses,

the brain’s ability to use glucose, its main fuel source,

decreases. This decreased glucose metabolism is

followed by impairment of a type of memory called

episodic memory, and then a worsening of cognitive

skills that is called global cognitive impairment.(20)

Whether this pattern of changes will also hold true for

individualsathighriskforlate-onsetAlzheimer’s

diseaseoryounger-onsetAlzheimer’s(inwhich

symptoms develop before age 65) that is not

dominantly inherited requires further study.

Risk Factors for Alzheimer’s Disease

Many factors contribute to one’s likelihood of

developing Alzheimer’s. The greatest risk factor for

Alzheimer’s disease is advancing age, but Alzheimer’s

is not a typical part of aging. Most people with

Alzheimer’s disease are diagnosed at age 65 or older.

However,peopleyoungerthan65canalsodevelopthe

disease, although this is much more rare. Advancing

age is not the only risk factor for Alzheimer’s disease.

The following sections describe other risk factors.

Family History Individuals who have a parent, brother or sister with

Alzheimer’s are more likely to develop the disease

thanthosewhodonothaveafirst-degreerelativewith

Alzheimer’s.(21-23) Those who have more than one

first-degreerelativewithAlzheimer’sareatevenhigher

risk of developing the disease.(24) When diseases run in

families, heredity (genetics), shared environmental

and lifestyle factors, or both, may play a role. The

increased risk associated with having a family history

of Alzheimer’s is not entirely explained by whether

the individual has inherited the apolipoprotein

E-e4 risk gene.

Apolipoprotein E-e4 (APOE-e4) Gene The APOE gene provides the blueprint for a protein

thatcarriescholesterolinthebloodstream.Everyone

inherits one form of the APOEgene—e2, e3 or e4

—fromeachparent.Thee3 form is the most

common,(25)withabout60percentoftheU.S.

population inheriting e3 from both parents.(26) The e2

and e4 forms are much less common. An estimated

20to30percentofindividualsintheUnitedStates

have one or two copies of the e4 form(25-26);

approximately2percentoftheU.S.populationhastwo

copies of e4.(26) The remaining 10 to 20 percent have

one or two copies of e2.

Havingthee3 form is believed to neither increase nor

decrease one’s risk of Alzheimer’s, while having the

e2 form may decrease one’s risk. The e4 form,

however, increases the risk of developing Alzheimer’s

disease and of developing it at a younger age. Those

who inherit two e4 genes have an even higher risk.

Researchers estimate that between 40 and 65 percent

of people diagnosed with Alzheimer’s have one or

two copies of the APOE-e4 gene.(25,27-28)

Inheriting the APOE-e4 gene does not guarantee that

an individual will develop Alzheimer’s. This is also

true for several genes that appear to increase risk of

Alzheimer’s, but have a limited overall effect in the

population because they are rare or only slightly

increase risk. Many factors other than genetics are

believed to contribute to the development of

Alzheimer’s disease.

Mild Cognitive Impairment (MCI) MCIisaconditioninwhichanindividualhasmildbut

measurable changes in thinking abilities that are

noticeable to the person affected and to family

members and friends, but that do not affect the

individual’s ability to carry out everyday activities.

12

PeoplewithMCI,especiallyMCIinvolvingmemory

problems, are more likely to develop Alzheimer’s and

otherdementiasthanpeoplewithoutMCI.However,

MCIdoesnotalwaysleadtodementia.Forsome

individuals,MCIrevertstonormalcognitiononitsown

or remains stable. In other cases, such as when a

medicationcausescognitiveimpairment,MCIis

mistakenly diagnosed. Therefore, it’s important that

people experiencing cognitive impairment seek help as

soon as possible for diagnosis and possible treatment.

The 2011 proposed criteria and guidelines for diagnosis

of Alzheimer’s disease(8-11) suggest that in some cases

MCIisactuallyanearlystageofAlzheimer’soranother

dementia.(FormoreinformationonMCI,see

AModernDiagnosisofAlzheimer’sDisease:Proposed

NewCriteriaandGuidelines,pages8-9.)

Cardiovascular Disease Risk Factors Growingevidencesuggeststhatthehealthofthebrain

is closely linked to the overall health of the heart and

blood vessels. The brain is nourished by one of the

body’s richest networks of blood vessels. A healthy

heart helps ensure that enough blood is pumped

through these blood vessels to the brain, and healthy

blood vessels help ensure that the brain is supplied

withtheoxygen-andnutrient-richblooditneedsto

function normally.

Many factors that increase the risk of cardiovascular

disease are also associated with a higher risk of

developing Alzheimer’s and other dementias. These

factors include smoking,(29-31) obesity (especially in

midlife),(32-37)diabetes,(31,38-41) high cholesterol in

midlife(34, 42) and hypertension in midlife.(34,37,43-45)

A pattern that has emerged from these findings, taken

together, is that dementia risk may increase with the

presence of the “metabolic syndrome,” a collection of

conditionsoccurringtogether—specifically,threeor

more of the following: hypertension, high blood

glucose, central obesity (obesity in which excess

weight is predominantly carried at the waist) and

abnormal blood cholesterol levels.(40)

Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures

Conversely,factorsthatprotecttheheartmayprotectthe

brain and reduce the risk of developing Alzheimer’s and

otherdementias.Physicalactivity(40,46-48) appears to be

one of these factors. In addition, emerging evidence

suggests that consuming a diet that benefits the heart,

such as one that is low in saturated fats and rich in

vegetablesandvegetable-basedoils,maybeassociated

with reduced Alzheimer’s and dementia risk.(40)

Unlikegeneticriskfactors,manyofthesecardiovascular

disease risk factors are modifiable—thatis,theycanbe

changed to decrease the likelihood of developing

cardiovascular disease and, possibly, the cognitive decline

associated with Alzheimer’s and other forms of dementia.

Education Peoplewithfeweryearsofeducationareathigherriskfor

Alzheimer’s and other dementias than those with more

years of formal education.(49-53) Some researchers believe

that having more years of education builds a “cognitive

reserve” that enables individuals to better compensate for

changes in the brain that could result in symptoms of

Alzheimer’s or another dementia.(52,54-56) According to the

cognitive reserve hypothesis, having more years of

education increases the connections between neurons in

the brain and enables the brain to compensate for the

early brain changes of Alzheimer’s by using alternate

routesofneuron-to-neuroncommunicationtocompletea

cognitivetask.However,somescientistsbelievethatthe

increased risk of dementia among those with lower

educational attainment may be explained by other factors

common to people in lower socioeconomic groups, such

as increased risk for disease in general and less access to

medical care.(57)

Social and Cognitive Engagement Additional studies suggest that other modifiable factors,

such as remaining mentally(58-60) and socially active, may

support brain health and possibly reduce the risk of

Alzheimer’s and other dementias.(61-68) Remaining socially

and cognitively active may help build cognitive reserve

(seeEducation,above),buttheexactmechanismbywhich

thismayoccurisunknown.Comparedwithcardiovascular

disease risk factors, there are fewer studies of the

association between social and cognitive engagement and

the likelihood of developing Alzheimer’s disease and other

dementias. More research is needed to better understand

how social and cognitive engagement may affect

biological processes to reduce risk.

Traumatic Brain Injury (TBI) ModerateandsevereTBIincreasetheriskofdeveloping

Alzheimer’s disease and other dementias.(69)TBIisthe

disruptionofnormalbrainfunctioncausedbyabloworjolt

totheheadorpenetrationoftheskullbyaforeignobject.

Notallblowsorjoltstotheheaddisruptbrainfunction.

ModerateTBIisdefinedasaheadinjuryresultinginloss

ofconsciousnessorpost-traumaticamnesiathatlasts

more than 30 minutes. If loss of consciousness or

post-traumaticamnesialastsmorethan24hours,the

injuryisconsideredsevere.Halfofallmoderateorsevere

TBIsarecausedbymotorvehicleaccidents.(70) Moderate

TBIisassociatedwithtwicetheriskofdeveloping

Alzheimer’s and other dementias compared with no head

injuries,andsevereTBIisassociatedwith4.5timesthe

risk.(71) These increased risks have not been studied for

individualsexperiencingoccasionalmildheadinjuryorany

number of common minor mishaps such as bumping

one’s head against a shelf or an open cabinet door.

Groupsthatexperiencerepeatedheadinjuries,such

as boxers, football players(72) and combat veterans, are

at higher risk of dementia, cognitive impairment and

neurodegenerative disease than individuals who

experiencenoheadinjury.(73-78)Emergingevidence

suggeststhatevenrepeatedmildTBImightpromote

neurodegenerative disease.(79) Some of these

neurodegenerative diseases, such as chronic traumatic

encephalopathy, can only be distinguished from

Alzheimer’s upon autopsy.

Treatment of Alzheimer’s Disease

Pharmacologic Treatment

Pharmacologictreatmentsaretreatmentsinwhich

medication is administered to stop an illness or treat its

symptoms. None of the treatments available today for

Alzheimer’s disease slows or stops the death and

2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease 13

malfunction of neurons in the brain that cause

Alzheimer’s symptoms and make the disease fatal.

However,dozensofdrugsandtherapiesaimedat

slowing or stopping brain cell death and malfunction are

being studied worldwide. Five drugs have been

approvedbytheU.S.FoodandDrugAdministrationthat

temporarily improve symptoms of Alzheimer’s disease

by increasing the amount of chemicals called

neurotransmitters in the brain. The effectiveness of

these drugs varies across the population.

Despitethelackofdisease-modifyingtherapies,studies

have consistently shown that active medical

management of Alzheimer’s and other dementias can

improve quality of life through all stages of the disease

for individuals with dementia and their caregivers.(79-81)

Active management includes (1) appropriate use of

available treatment options; (2) effective management

of coexisting conditions; (3) coordination of care among

physicians, other health care professionals and lay

caregivers; (4) participation in activities and/or adult day

care programs; and (5) taking part in support groups and

supportive services.

Nonpharmacologic Therapy

Nonpharmacologic therapies are those that employ

approaches other than medication, such as cognitive

training and behavioral interventions. As with

pharmacologic therapies, no nonpharmacologic

therapies have been shown to alter the course of

Alzheimer’s disease, although some are used with the

goal of maintaining cognitive function or helping the

brain compensate for impairments. Other

nonpharmacologic therapies are intended to improve

quality of life or reduce behavioral symptoms such as

depression, apathy, wandering, sleep disturbances,

agitation and aggression. A wide range of

nonpharmacologic interventions have been proposed or

studied, although few have sufficient evidence

supporting their effectiveness. There is some evidence

that specific nonpharmacologic therapies may improve

or stabilize cognitive function, performance of daily

activities, behavior, mood and quality of life.(82)

prevAlence

one in nine people Age 65 And

older hAs Alzheimer’s diseAse.

3 # 3 # 3 # 3 # 3

15

Estimatesfromselectedstudiesontheprevalenceand

characteristics of people with Alzheimer’s and other

dementias vary depending on how each study was

conducted. Data from several studies are used in this

section (for data sources and study methods, see the

Appendices). Most estimates are from a new study

using the same methods as the study that provided

estimates in previous years’ Facts and Figures

reports, but with updated data.(83),A1Although some

of the estimates are slightly different than estimates

in previous Facts and Figures reports, researchers

consider them to be statistically indistinguishable

from previous estimates when accounting for margins

of error.

prevAlence of Alzheimer’s diseAse And other dementiAs

An estimated 5.2 million Americans of all ages

have Alzheimer’s disease in 2013. This includes an

estimated 5 million people age 65 and older(83),A1

and approximately 200,000 individuals under age

65whohaveyounger-onsetAlzheimer’s.(84)

•Oneinninepeopleage65andolder(11percent)

has Alzheimer’s disease.A2

•Aboutone-thirdofpeopleage85andolder

(32 percent) have Alzheimer’s disease.(83)

•OfthosewithAlzheimer’sdisease,anestimated

4 percent are under age 65, 13 percent are 65 to 74,

44percentare75to84,and38percentare85

or older.(83),A3

The estimated prevalence for people age 65 and older

comes from a new study using the latest data from

the2010U.S.CensusandtheChicagoHealthand

AgingProject(CHAP),apopulation-basedstudyof

chronic health diseases of older people. Although this

estimate is slightly lower than the estimate presented

in previous Facts and Figures reports, it does not

represent a real change in prevalence. According to the

lead author of both the original and the new studies

on the prevalence of Alzheimer’s, “Statistically, [the

estimates] are comparable, and, more importantly,

both old and new estimates continue to show that the

burden [Alzheimer’s disease] places on the population,

short of any effective preventive interventions, is going

to continue to increase substantially.”(83)

InadditiontoestimatesfromCHAP,thenational

prevalence of Alzheimer’s disease and all forms of

dementiahavebeenestimatedfromotherpopulation-

based studies, including the Aging, Demographics, and

Memory Study (ADAMS), a nationally representative

sample of older adults.(85-86),A4 National estimates

of the prevalence of all forms of dementia are not

availablefromCHAP,butbasedonestimatesfrom

ADAMS, 13.9 percent of people age 71 and older in

theUnitedStateshavedementia.(85)

PrevalencestudiessuchasCHAPandADAMSare

designed so that all individuals with dementia are

detected.Butinthecommunity,onlyabouthalf

of those who would meet the diagnostic criteria

for Alzheimer’s disease and other dementias have

received a diagnosis of dementia from a physician.(87)

BecauseAlzheimer’sdiseaseisunder-diagnosed,

half of the estimated 5.2 million Americans with

Alzheimer’s may not know they have it.

2013 Alzheimer’s Disease Facts and Figures Prevalence

Millions of Americans have Alzheimer’s disease and other dementias. The number of Americans with Alzheimer’s disease and other dementias will grow each year as the number and proportion of the U.S.populationage65andoldercontinuetoincrease.Thenumberwillescalate rapidly in coming years as the baby boom generation ages.

16 Prevalence 2013 Alzheimer’s Disease Facts and Figures

TheestimatesfromCHAPandADAMSarebasedon

commonly accepted criteria for diagnosing Alzheimer’s

diseasethathavebeenusedsince1984.In2009,an

expert workgroup was convened by the Alzheimer’s

Association and the NIA to recommend updated

diagnostic criteria and guidelines, as described in

theOverview(pages8-9).Theseproposednewcriteria

and guidelines were published in 2011.(8-11)If Alzheimer’s

disease can be detected earlier, in the stages of

preclinicalAlzheimer’sand/orMCIduetoAlzheimer’s

as defined by the 2011 criteria, the number of people

reported to have Alzheimer’s disease would be much

larger than what is presented in this report.

Prevalence of Alzheimer’s Disease and Other Dementias in Women and Men

More women than men have Alzheimer’s disease and

otherdementias.Almosttwo-thirdsofAmericanswith

Alzheimer’s are women.(83),A5Of the 5 million people

age65andolderwithAlzheimer’sintheUnitedStates,

3.2millionarewomenand1.8millionaremen.(83),A5

BasedonestimatesfromADAMS,16percentof

women age 71 and older have Alzheimer’s disease and

other dementias compared with 11 percent of men.(85,88)

The larger proportion of older women who have

Alzheimer’s disease and other dementias is primarily

explained by the fact that women live longer,

on average, than men.(88-89) Many studies of the

age-specificincidence(developmentofnewcases)of

Alzheimer’s disease(89-95)or any dementia(90-92,96-97) have

found no significant difference by sex. Thus, women

are not more likely than men to develop dementia at

any given age.

Prevalence of Alzheimer’s Disease and Other Dementias by Years of education

Peoplewithfeweryearsofeducationappeartobe

at higher risk for Alzheimer’s and other dementias than

those with more years of education.(91,94,97-99) Some

of the possible reasons are explained in the Risk

Factors for Alzheimer’s Disease section of the

Overview (page 12).

Prevalence of Alzheimer’s Disease and Other Dementias in Older Whites, African-Americans and hispanics

WhilemostpeopleintheUnitedStateslivingwith

Alzheimer’sandotherdementiasarenon-Hispanic

whites,olderAfrican-AmericansandHispanicsare

proportionately more likely than older whites to have

Alzheimer’s disease and other dementias.(100-101)

DataindicatethatintheUnitedStates,olderAfrican-

Americans are probably about twice as likely to have

Alzheimer’s and other dementias as older whites,(102)

andHispanicsareaboutoneandone-halftimesas

likely to have Alzheimer’s and other dementias as older

whites.(103) Figure 1 shows the estimated prevalence

for each group, by age.

Despite some evidence of racial differences in the

influence of genetic risk factors on Alzheimer’s and

other dementias, genetic factors do not appear to

account for these large prevalence differences across

racial groups.(104) Instead, health conditions such as

high blood pressure and diabetes that may increase

one’s risk for Alzheimer’s disease and other dementias

are believed to account for these differences because

theyaremoreprevalentinAfrican-Americanand

Hispanicpeople.Lowerlevelsofeducationandother

socioeconomic characteristics in these communities

may also increase risk. Some studies suggest that

differences based on race and ethnicity do not persist

in detailed analyses that account for these factors.(85,91)

There is evidence that missed diagnoses are more

commonamongolderAfrican-Americansand

Hispanicsthanamongolderwhites.(105-106) A recent

study of Medicare beneficiaries found that Alzheimer’s

disease and other dementias had been diagnosed in

8.2percentofwhitebeneficiaries,11.3percentof

African-Americanbeneficiariesand12.3percentof

Hispanicbeneficiaries.(107) Although rates of diagnosis

werehigheramongAfrican-Americansthanamong

whites, this difference was not as great as would be

expected based on the estimated differences found in

prevalence studies, which are designed to detect all

people who have dementia.

17 2013 Alzheimer’s Disease Facts and Figures Prevalence

incidence And lifetime risk of Alzheimer’s diseAse

While prevalence is the number of existing cases of a

disease in a population at a given time, incidence is the

number of new cases of a disease that develop in

a given time period. The estimated annual incidence

(rate of developing disease in one year) of Alzheimer’s

disease appears to increase dramatically with age, from

approximately 53 new cases per 1,000 people age 65 to

74,to170newcasesper1,000peopleage75to84,to

231newcasesper1,000peopleage85andolder(the

“oldest-old”).(108) Some studies have found that incidence

rates drop off after age 90, but these findings are

controversial. One analysis indicates that dementia

incidence may continue to increase and that previous

observations of a leveling off of incidence rates among

theoldest-oldmaybeduetosparsedataforthisgroup.(109)Becauseoftheincreasingnumberofpeopleage65

andolderintheUnitedStates,theannualnumberofnew

casesofAlzheimer’sandotherdementiasisprojectedto

double by 2050.(108)

•Every68seconds,someoneintheUnitedStates

develops Alzheimer’s.A6

•Bymid-century,someoneintheUnitedStateswill

develop the disease every 33 seconds.A6

Lifetime risk is the probability that someone of a given age

develops a condition during their remaining lifespan. Data

from the Framingham Study were used to estimate lifetime

risks of Alzheimer’s disease and of any dementia.(110), A7

Thestudyfoundthat65-year-oldwomenwithoutdementia

had a 20 percent chance of developing dementia during

the remainder of their lives (estimated lifetime risk),

compared with a 17 percent chance for men. As shown

inFigure2(page18),forAlzheimer’sdiseasespecifically,

the estimated lifetime risk at age 65 was nearly one in

five (17.2 percent) for women compared with one in

11 (9.1 percent) for men.(110),A8As previously noted, these

differences in lifetime risks between women and men are

largely due to women’s longer life expectancy.

Percentage

FIGURe 1 PROPORTION OF PeOPLe AGe 65 AND OLDeR WITh ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS

WhiteAfrican-AmericanHispanic

70

60

50

40

30

20

10

0

9.12.9 7.5

10.9

19.9

27.930.2

58.662.9

CreatedfromdatafromGurlandetal. (103)

Age 65to74 75to84 85+

18 Prevalence 2013 Alzheimer’s Disease Facts and Figures

The definition of Alzheimer’s disease and other

dementias used in the Framingham Study required

documentation of moderate to severe disease as

well as symptoms lasting a minimum of six months.

Usingadefinitionthatalsoincludesmilderdiseaseand

disease of less than six months’ duration, lifetime risks

of Alzheimer’s disease and other dementias would be

much higher than those estimated by this study.

estimAtes of the number of people with Alzheimer’s diseAse, by stAte

Table2(pages21–22)summarizestheprojectedtotal

number of people age 65 and older with Alzheimer’s

disease by state for 2000, 2010 and 2025.A9 The

percentage changes in the number of people with

Alzheimer’s between 2000 and 2010 and between

2000 and 2025 are also shown. Note that the total

number of people with Alzheimer’s is larger for states

withlargerpopulations,suchasCaliforniaandNew

York.Comparableestimatesandprojectionsforother

types of dementia are not available.

As shown in Figure 3, between 2000 and 2025 some

states and regions across the country are expected

toexperiencedouble-digitpercentageincreasesinthe

numbers of people with Alzheimer’s due to increases

in the proportion of the population age 65 and older.

The South and West are expected to experience

50 percent and greater increases in numbers of

people with Alzheimer’s between 2000 and 2025.

Somestates(Alaska,Colorado,Idaho,Nevada,Utah

andWyoming)areprojectedtoexperienceadoubling

(or more) of the number of people with Alzheimer’s.

AlthoughtheprojectedincreasesintheNortheastare

not nearly as marked as those in other regions of the

UnitedStates,itshouldbenotedthatthisregionof

the country currently has a large proportion of people

with Alzheimer’s relative to other regions because this

region already has a high proportion of people age 65

and older. The increasing number of individuals with

Alzheimer’s will have a marked impact on states’ health

care systems, as well as on families and caregivers.

CreatedfromdatafromSeshadrietal. (110)

25

20

15

10

5

0

Men Women

9.1%

17.2%

Age 65 75 85

FIGURe 2 eSTIMATeD LIFeTIMe RISkS FOR ALzheIMeR’S, BY AGe AND Sex, FROM The FRAMINGhAM STUDY

Percentage

9.1%

17.2%

10.2%

18.5%

12.1%

20.3%

19 2013 Alzheimer’s Disease Facts and Figures Prevalence

looking to the future

ThenumberofAmericanssurvivingintotheir80s,90s

and beyond is expected to grow dramatically due to

advances in medicine and medical technology, as well

as social and environmental conditions.(111) Additionally,

alargesegmentoftheAmericanpopulation—the

babyboomgeneration—hasbeguntoreachtheage

range of elevated risk for Alzheimer’s and other

dementias, with the first baby boomers having reached

age65in2011.By2030,thesegmentoftheU.S.

population age 65 and older is expected to grow

dramatically, and the estimated 72 million older

Americans will make up approximately 20 percent of

the total population (up from 13 percent in 2010).(111)

0–24.0% 24.1%–31.0% 31.1%–49.0% 49.1%–81.0% 81.1%–127.0%

CreatedfromdatafromHebertetal.A9

Percentage

FIGURe 3 PROJeCTeD ChANGeS BeTWeeN 2000 AND 2025 IN ALzheIMeR’S PReVALeNCe BY STATe

20 Prevalence 2013 Alzheimer’s Disease Facts and Figures

As the number of older Americans grows rapidly, so

too will the numbers of new and existing cases of

Alzheimer’s disease, as shown in Figure 4.(83),A10

• In2000,therewereanestimated411,000newcases

of Alzheimer’s disease. For 2010, that number was

estimated to be 454,000 (a 10 percent increase);

by2030,itisprojectedtobe615,000(a50percent

increase from 2000); and by 2050, 959,000

(a 130 percent increase from 2000).(108)

•By2025,thenumberofpeopleage65andolderwith

Alzheimer’s disease is estimated to reach 7.1 million

—a40percentincreasefromthe5millionage65and

older currently affected.(83),A11

•By2050,thenumberofpeopleage65andolderwith

Alzheimer’s disease may nearly triple, from 5 million

toaprojected13.8million,barringthedevelopment

of medical breakthroughs to prevent, slow or stop the

disease.(83),A10Previousestimatessuggestthatthis

number may be as high as 16 million.(112), A12

Longer life expectancies and aging baby boomers

will also increase the number and percentage of

Americanswhowillbeamongtheoldest-old.Between

2010and2050,theoldest-oldareexpectedtoincrease

from 14 percent of all people age 65 and older in the

UnitedStatesto20percentofallpeopleage65and

older.(111) This will result in an additional 13 million

oldest-oldpeople—individualsatthehighestriskfor

developing Alzheimer’s.(111)

•By2050,thenumberofAmericansage85years

and older will nearly quadruple to 21 million.(111)

• In2013,the85-years-and-olderpopulationincludes

about 2 million people with Alzheimer’s disease,

or 40 percent of all people with Alzheimer’s age

65 and older.(83)

•Whenthefirstwaveofbabyboomersreachesage85

(in2031),itisprojectedthatmorethan3millionpeople

age85andolderarelikelytohaveAlzheimer’s.(83)

16

14

12

10

8

6

4

2

0

Millions of people with Alzheimer’s

Year 2010 2020 2030 2040 2050

CreatedfromdatafromHebertetal.(83),A10

FIGURe 4 PROJeCTeD NUMBeR OF PeOPLe AGe 65 AND OLDeR (TOTAL AND BY AGe GROUP) IN The U.S. POPULATION WITh ALzheIMeR’S DISeASe, 2010 TO 2050

Ages65-74Ages75-84Ages85+

4.7

5.8

8.4

11.6

13.8

21 2013 Alzheimer’s Disease Facts and Figures Prevalence

Percentage Change in Alzheimer’s (Compared with 2000)

Projected Total Numbers (in 1,000s)

with Alzheimer’s

State 2000 2010 2025 2010 2025

Alabama 84.0 91.0 110.0 8 31

Alaska 3.4 5.0 7.7 47 126

Arizona 78.0 97.0 130.0 24 67

Arkansas 56.0 60.0 76.0 7 36

California 440.0 480.0 660.0 9 50

Colorado 49.0 72.0 110.0 47 124

Connecticut 68.0 70.0 76.0 3 12

Delaware 12.0 14.0 16.0 17 33

DistrictofColumbia 10.0 9.1 10.0 -9 0

Florida 360.0 450.0 590.0 25 64

Georgia 110.0 120.0 160.0 9 45

Hawaii 23.0 27.0 34.0 17 48

Idaho 19.0 26.0 38.0 37 100

Illinois 210.0 210.0 240.0 0 14

Indiana 100.0 120.0 130.0 20 30

Iowa 65.0 69.0 77.0 6 18

Kansas 50.0 53.0 62.0 6 24

Kentucky 74.0 80.0 97.0 8 31

Louisiana 73.0 83.0 100.0 14 37

Maine 25.0 25.0 28.0 0 12

Maryland 78.0 86.0 100.0 10 28

Massachusetts 120.0 120.0 140.0 0 17

Michigan 170.0 180.0 190.0 6 12

Minnesota 88.0 94.0 110.0 7 25

Mississippi 51.0 53.0 65.0 4 27

Missouri 110.0 110.0 130.0 0 18

Montana 16.0 21.0 29.0 31 81

Nebraska 33.0 37.0 44.0 12 33

Nevada 21.0 29.0 42.0 38 100

NewHampshire 19.0 22.0 26.0 16 37

NewJersey 150.0 150.0 170.0 0 13

TABLe 2 PROJeCTIONS OF TOTAL NUMBeRS OF AMeRICANS AGe 65 AND OLDeR WITh ALzheIMeR’S, BY STATe

22 Prevalence 2013 Alzheimer’s Disease Facts and Figures

CreatedfromdatafromHebertetal.A9

Projected Total Numbers (in 1,000s)

with Alzheimer’s

State 2000 2010 2025 2010 2025

New Mexico 27.0 31.0 43.0 15 59

NewYork 330.0 320.0 350.0 -3 6

NorthCarolina 130.0 170.0 210.0 31 62

NorthDakota 16.0 18.0 20.0 13 25

Ohio 200.0 230.0 250.0 15 25

Oklahoma 62.0 74.0 96.0 19 55

Oregon 57.0 76.0 110.0 33 93

Pennsylvania 280.0 280.0 280.0 0 0

Rhode Island 24.0 24.0 24.0 0 0

SouthCarolina 67.0 80.0 100.0 19 49

South Dakota 17.0 19.0 21.0 12 24

Tennessee 100.0 120.0 140.0 20 40

Texas 270.0 340.0 470.0 26 74

Utah 22.0 32.0 50.0 45 127

Vermont 10.0 11.0 13.0 10 30

Virginia 100.0 130.0 160.0 30 60

Washington 83.0 110.0 150.0 33 81

West Virginia 40.0 44.0 50.0 10 25

Wisconsin 100.0 110.0 130.0 10 30

Wyoming 7.0 10.0 15.0 43 114

TABLe 2 (cont.) PROJeCTIONS OF TOTAL NUMBeRS OF AMeRICANS AGe 65 AND OLDeR WITh ALzheIMeR’S, BY STATe

Percentage Change in Alzheimer’s (Compared with 2000)

mortAlity

5Alzheimer’s is the sixth-leAding cAuse of deAth

in the united stAtes And the fifth-leAding cAuse

of deAth for individuAls Age 65 And older.

24 Mortality 2013 Alzheimer’s Disease Facts and Figures

deAths from Alzheimer’s diseAse

It is difficult to determine how many deaths are

caused by Alzheimer’s disease each year because of

the way causes of death are recorded. According to

finaldatafromtheNationalCenterforHealthStatistics

oftheCentersforDiseaseControlandPrevention

(CDC),83,494peoplediedfromAlzheimer’sdisease

in 2010 (the most recent year for which final data are

available).(113)TheCDCconsidersapersontohavedied

from Alzheimer’s if the death certificate lists

Alzheimer’s as the underlying cause of death, defined

bytheWorldHealthOrganizationas“thediseaseor

injurywhichinitiatedthetrainofeventsleadingdirectly

to death.”(114) However,deathcertificatesforindividuals

with Alzheimer’s often list acute conditions such as

pneumonia as the primary cause of death rather than

Alzheimer’s.(115-117)Severe dementia frequently causes

complications such as immobility, swallowing

disorders and malnutrition that can significantly

increase the risk of other serious conditions that can

cause death. One such condition is pneumonia, which

has been found in several studies to be the most

commonly identified cause of death among elderly people

with Alzheimer’s disease and other dementias.(118-119)

The number of people with Alzheimer’s and other

dementias who die while experiencing these

conditions may not be counted among the number of

people who died from Alzheimer’s disease according

totheCDCdefinition,eventhoughAlzheimer’s

disease is likely a contributing cause of death. Thus,

it is likely that Alzheimer’s disease is a contributing

cause of death for more Americans than is indicated

byCDCdata.

The situation has been described as a “blurred

distinction between death with dementia and death

from dementia.”(120)AccordingtoCHAPdata,an

estimated 400,000 people died with Alzheimer’s in

2010, meaning they died after developing Alzheimer’s

disease.A13 Furthermore, according to Medicare data,

one-thirdofallseniorswhodieinagivenyearhave

been previously diagnosed with Alzheimer’s or

another dementia.(107, 121) Although some seniors who

die with Alzheimer’s disease die from causes that

were unrelated to Alzheimer’s, many of them die

from Alzheimer’s disease itself or from conditions in

which Alzheimer’s was a contributing cause, such as

pneumonia. A recent study evaluated the contribution

of individual common diseases to death using a

nationally representative sample of older adults, and

it found that dementia was the second largest

contributor to death behind heart failure.(122) Thus, for

people who die with Alzheimer’s disease and other

dementias, dementia is expected to be a significant

direct contributor to their deaths.

In2013,anestimated450,000peopleintheUnited

States will die with Alzheimer’s.A13 The true number

of deaths caused by Alzheimer’s is likely to be

somewhere between the official estimated numbers

of those dying from Alzheimer’s (as indicated by

death certificates) and those dying with Alzheimer’s

(that is, dying after developing Alzheimer’s).

Regardless of the cause of death, among people

age 70, 61 percent of those with Alzheimer’s are

expectedtodiebeforeage80comparedwith

30 percent of people without Alzheimer’s.(123)

Alzheimer’sdiseaseisofficiallylistedasthesixth-leadingcauseofdeathintheUnitedStates.(113) Itisthefifth-leadingcauseofdeath for those age 65 and older.(113) However,itmaycauseevenmore deaths than official sources recognize.

25 2013 Alzheimer’s Disease Facts and Figures Mortality

public heAlth impAct of deAths from Alzheimer’s diseAse

AsthepopulationoftheUnitedStatesages,

Alzheimer’s is becoming a more common cause of

death.Whiledeathsfromothermajorcauseshave

decreased significantly, deaths from Alzheimer’s

diseasehaveincreasedsignificantly.Between2000

and 2010, deaths attributed to Alzheimer’s disease

increased68percent,whilethoseattributedtothe

number one cause of death, heart disease, decreased

16 percent (Figure 5).(113, 124) The increase in the number

and proportion of death certificates listing Alzheimer’s

as the underlying cause of death reflects both changes

in patterns of reporting deaths on death certificates

over time as well as an increase in the actual number

of deaths attributable to Alzheimer’s.

Another way to describe the impact of Alzheimer’s

disease on mortality is through a statistic known as

population attributable risk. It represents the proportion

of deaths (in a specified amount of time) in a population

that may be preventable if a disease were eliminated.

The population attributable risk of Alzheimer’s disease

on mortality over five years in people age 65 and

older is estimated to be between 5 percent and

15 percent.(125-126) This means that over the next five

years, 5 percent to 15 percent of all deaths in older

people can be attributed to Alzheimer’s disease.

CreatedfromdatafromtheNationalCenterforHealthStatistics.(113,124)

70

60

50

40

30

20

10

0

-10

-20

-30

-40

-50

Cause of Death

Alzheimer’s Stroke Prostate Breast Heart HIV disease cancer cancer disease

-2%

-23%

-8%

-16%

-42%

+ 68%

Percentage

FIGURe 5 PeRCeNTAGe ChANGeS IN SeLeCTeD CAUSeS OF DeATh (ALL AGeS) BeTWeeN 2000 AND 2010

Alabama 1,523 31.9

Alaska 85 12.0

Arizona 2,327 36.4

Arkansas 955 32.8

California 10,856 29.1

Colorado 1,334 26.5

Connecticut 820 22.9

Delaware 215 23.9

DistrictofColumbia 114 18.9

Florida 4,831 25.7

Georgia 2,080 21.5

Hawaii 189 13.9

Idaho 410 26.2

Illinois 2,927 22.8

Indiana 1,940 29.9

Iowa 1,411 46.3

Kansas 825 28.9

Kentucky 1,464 33.7

Louisiana 1,295 28.6

Maine 502 37.8

Maryland 986 17.1

Massachusetts 1,773 27.1

Michigan 2,736 27.7

Minnesota 1,451 27.4

Mississippi 927 31.2

Missouri 1,986 33.2

CreatedfromdatafromtheNationalCenterforHealthStatistics.(113)

State Number of Deaths Rate

State Number of Deaths Rate

Montana 302 30.5

Nebraska 565 30.9

Nevada 296 11.0

NewHampshire 396 30.1

NewJersey 1,878 21.4

New Mexico 343 16.7

New York 2,616 13.5

NorthCarolina 2,817 29.5

North Dakota 361 53.7

Ohio 4,109 35.6

Oklahoma 1.015 27.1

Oregon 1,300 33.9

Pennsylvania 3,591 28.3

RhodeIsland 338 32.1

SouthCarolina 1,570 33.9

SouthDakota 398 48.9

Tennessee 2,440 38.4

Texas 5,209 20.7

Utah 375 13.6

Vermont 238 38.0

Virginia 1,848 23.1

Washington 3,025 45.0

West Virginia 594 32.1

Wisconsin 1,762 31.0

Wyoming 146 25.9

U.S. Total 83,494 27.0

TABLe 3 NUMBeR OF DeAThS AND ANNUAL MORTALITY RATe (PeR 100,000) DUe TO ALzheIMeR’S DISeASe, BY STATe, 2010

Mortality 2013 Alzheimer’s Disease Facts and Figures26

27

stAte-by-stAte deAths from Alzheimer’s diseAse

Table 3 provides information on the number of

deaths due to Alzheimer’s by state in 2010, the most

recentyearforwhichstate-by-statedataare

available. This information was obtained from death

certificates and reflects the condition identified by

the physician as the underlying cause of death.

The table also provides annual mortality rates by

state to compare the risk of death due to Alzheimer’s

disease across states with varying population sizes.

FortheUnitedStatesasawhole,in2010,the

mortality rate for Alzheimer’s disease was 27 deaths

per 100,000 people.(113)

deAth rAtes by Age

Although people younger than 65 can develop and

die from Alzheimer’s disease, the highest risk of

death from Alzheimer’s is in people age 65 or older.

As seen in Table 4, death rates for Alzheimer’s

increasedramaticallywithage.Comparedwiththe

rate of death due to any cause among people age

65 to 74, death rates were 2.6 times as high for

thoseage75to84and7.4timesashighforthose

age85andolder.Fordiseasesoftheheart,mortality

rates were 2.9 times and 10.5 times as high,

respectively. For all cancers, mortality rates were

1.8timesashighand2.6timesashigh,respectively.

In contrast, Alzheimer’s disease death rates were

9.3timesashighforpeopleage75to84and49.9

timesashighforpeople85andoldercomparedwith

the Alzheimer’s disease death rate among people

age 65 to 74.(113) The high death rate at older ages

for Alzheimer’s underscores the lack of a cure or

effective treatments for the disease.

durAtion of illness from diAgnosis to deAth

Studies indicate that people age 65 and older survive

an average of four to eight years after a diagnosis of

Alzheimer’s disease, yet some live as long as 20 years

with Alzheimer’s.(126-131) This indicates the slow,

insidious nature of the progression of Alzheimer’s. On

average, a person with Alzheimer’s disease will spend

more years (40 percent of the total number of years

with Alzheimer’s) in the most severe stage of the

disease than in any other stage.(123) Much of this time

will be spent in a nursing home, as nursing home

admissionbyage80isexpectedfor75percentof

people with Alzheimer’s compared with only 4 percent

of the general population.(123) In all, an estimated

two-thirdsofthosedyingofdementiadosoinnursing

homes, compared with 20 percent of cancer patients

and28percentofpeopledyingfromallother

conditions.(132) Thus, the long duration of illness before

death contributes significantly to the public health

impact of Alzheimer’s disease.

*Reflects average death rate for ages 45 and older.

CreatedfromdatafromtheNationalCenterforHealthStatistics.(113)

Age 2000 2002 2004 2006 2008 2010

45–54 0.2 0.1 0.2 0.2 0.2 0.3

55–64 2.0 1.9 1.8 2.1 2.2 2.1

65–74 18.7 19.6 19.5 19.9 21.1 19.8

75–84 139.6 157.7 168.5 175.0 192.5 184.5

85+ 667.7 790.9 875.3 923.4 1,002.2 987.1

Rate* 18.1 20.8 22.6 23.7 25.8 25.1

TABLe 4 U.S. ALzheIMeR’S DeATh RATeS (PeR 100,000) BY AGe

2013 Alzheimer’s Disease Facts and Figures Mortality

cAregiving

@in 2012, AmericAns provided 17.5 billion hours of unpAid cAre

to people with Alzheimer’s diseAse And other dementiAs.

17.5B17.5

29 2013 Alzheimer’s Disease Facts and Figures Caregiving

(66percentversus71percentnon-Hispanicwhite)or

marital status (70 percent versus 71 percent married).

Almost half of caregivers took care of parents.(140)

TheNationalAllianceforCaregiving(NAC)/AARP

found that 30 percent of caregivers had children under

18yearsoldlivingwiththem;suchcaregiversare

sometimes called “sandwich caregivers” because they

simultaneously provide care for two generations.(141)

ethnic and Racial Diversity in Caregiving

Among caregivers of people with Alzheimer’s disease

andotherdementias,theNAC/AARPfoundthe

following:(141)

•Agreaterproportionofwhitecaregiversassista

parent than caregivers of individuals from other racial/

ethnicgroups(54percentversus38percent).

•Onaverage,HispanicandAfrican-American

caregivers spend more time caregiving

(approximately30hoursperweek)thannon-Hispanic

whitecaregivers(20hoursperweek)andAsian-

American caregivers (16 hours per week).

•Hispanic(45percent)andAfrican-American

caregivers (57 percent) are more likely to experience

high burden from caregiving than whites and

Asian-Americans(aboutone-thirdandone-third,

respectively).

AsnotedinthePrevalencesectionofthisreport,the

racial/ethnic distribution of people with Alzheimer’s

diseasewillchangedramaticallyby2050.Giventhe

greater likelihood of acquiring Alzheimer’s disease

amongAfrican-AmericansandHispanicscoupledwith

theincreasingnumberofAfrican-Americanand

Hispanicolderadultsby2050,itcanbeassumedthat

family caregivers will be more ethnically and racially

diverse over the next 35 years.

unpAid cAregivers

Unpaidcaregiversareprimarilyimmediatefamily

members, but they also may be other relatives and

friends. In 2012, these people provided an estimated

17.5 billion hours of unpaid care, a contribution to

the nation valued at over $216 billion, which is

approximatelyhalfofthenetvalueofWal-Martsales

in 2011 ($419 billion)(135) and more than eight times

the total sales of McDonald’s in 2011 ($27 billion).(136)

Eightypercentofcareprovidedinthecommunity

is provided by unpaid caregivers (most often family

members), while fewer than 10 percent of older adults

receive all of their care from paid caregivers.(137)

Who Are the Caregivers?

Several sources have examined the demographic

background of family caregivers of people with

Alzheimer’s disease and other dementias.(138),A15

Datafromthe2010BehavioralRiskFactorSurveillance

System(BRFSS)surveyconductedinConnecticut,

NewHampshire,NewJersey,NewYorkand

Tennessee(138) found that 62 percent of caregivers of

people with Alzheimer’s disease and other dementias

were women; 23 percent were 65 years of age and

older; 50 percent had some college education or

beyond; 59 percent were currently employed, a student

or homemaker; and 70 percent were married or in a

long-termrelationship.(138)

The Aging, Demographics, and Memory Study (ADAMS),

based on a nationally representative subsample of older

adultsfromtheHealthandRetirementSurvey,(139)

compared two types of caregivers: those caring for

people with dementia and those caring for people with

cognitive problems that did not reach the threshold of

dementia. The caregiver groups did not differ

significantly by age (60 versus 61, respectively), gender

(71percentversus81percentfemale),race

Caregiving refers to attending to another individual’s health needs.Caregivingoftenincludesassistancewithoneormoreactivities of daily living (ADLs; such as bathing and dressing).(133-134) More than 15 million Americans provide unpaid care for people with Alzheimer’s disease and other dementias.A14

30 Caregiving 2013 Alzheimer’s Disease Facts and Figures

Caregiving Tasks

The care provided to people with Alzheimer’s disease

andotherdementiasiswide-rangingandinsome

instancesall-encompassing.Thetypesofdementia

care provided are shown in Table 5.

Though the care provided by family members of

people with Alzheimer’s disease and other dementias

is somewhat similar to the help provided by caregivers

of people with other diseases, dementia caregivers

tend to provide more extensive assistance. Family

caregivers of people with dementia are more likely

than caregivers of other older people to assist with any

ADL (Figure 6). More than half of dementia caregivers

report providing help with getting in and out of bed,

andaboutone-thirdoffamilycaregiversprovidehelpto

their care recipients with getting to and from the toilet,

bathing, managing incontinence and feeding (Figure 6).

These findings suggest the heightened degree of

dependency experienced by some people with

Alzheimer’s disease and other dementias. Fewer

caregivers of other older people report providing help

with each of these types of care.(141)

InadditiontoassistingwithADLs,almosttwo-thirds

of caregivers of people with Alzheimer’s and other

dementias advocate for their care recipient with

government agencies and service providers (64 percent),

and nearly half arrange and supervise paid caregivers

fromcommunityagencies(46percent).Bycontrast,

caregivers of other older adults are less likely to advocate

for their family member (50 percent) and supervise

community-basedcare(33percent).(141)Caringfora

person with dementia also means managing symptoms

that family caregivers of people with other diseases may

not face, such as neuropsychiatric symptoms and severe

behavioral problems.

Helpwithinstrumentalactivitiesofdailyliving(IADLs),suchashouseholdchores,shopping,preparingmeals,providing

transportation, arranging for doctor’s appointments, managing finances and legal affairs and answering the telephone.

Helpingthepersontakemedicationscorrectly,eitherviaremindersordirectadministrationofmedications.

Helpingthepersonadheretotreatmentrecommendationsfordementiaorothermedicalconditions.

Assisting with personal activities of daily living (ADLs), such as bathing, dressing, grooming, feeding and helping

the person walk, transfer from bed to chair, use the toilet and manage incontinence.

Managing behavioral symptoms of the disease such as aggressive behavior, wandering, depressive mood, agitation,

anxiety, repetitive activity and nighttime disturbances.(142)

Finding and using support services such as support groups and adult day service programs.

Makingarrangementsforpaidin-home,nursinghomeorassistedlivingcare.

Hiringandsupervisingotherswhoprovidecare.

Assuming additional responsibilities that are not necessarily specific tasks, such as:

• Providingoverallmanagementofgettingthroughtheday.

• Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with

otherfamilymembersaboutcareplans,decision-makingandarrangementsforrespiteforthemaincaregiver.

TABLe 5 DeMeNTIA CAReGIVING TASkS

31 2013 Alzheimer’s Disease Facts and Figures Caregiving

When a person with Alzheimer’s or other dementia

moves to an assisted living residence or nursing home,

the help provided by his or her family caregiver usually

changesfromhands-on,ADLtypesofcaretovisiting,

providing emotional support to the relative in residential

care, interacting with facility staff and advocating for

appropriatecarefortheirrelative.However,some

family caregivers continue to help with bathing,

dressing and other ADLs.(143-145) Admitting a relative to

a residential care setting (such as a nursing home) has

mixed effects on the emotional and psychological

well-beingoffamilycaregivers.Somestudiessuggest

that distress remains unchanged or even increases

after a relative is admitted to a residential care facility,

but other studies have found that distress declines

significantly after admission.(145-146) The relationship

between the caregiver and person with dementia may

explain these discrepancies. For example, husbands,

wives and daughters were significantly more likely to

indicate persistent burden up to 12 months following

placement than other family caregivers, while husbands

were more likely than other family caregivers to indicate

persistent depression up to a year following a relative’s

admission to a residential care facility.(146)

Duration of Caregiving

CaregiversofpeoplewithAlzheimer’sandother

dementias provide care for a longer time, on average,

than do caregivers of older adults with other conditions.

As shown in Figure 7 (page 32), 43 percent of

caregivers of people with Alzheimer’s and other

dementias provide care for one to four years compared

with 33 percent of caregivers of people without

dementia. Similarly, 32 percent of dementia caregivers

provide care for over five years compared with

28percentofcaregiversofpeoplewithoutdementia.(141)

CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeople

Gettinginand Dressing Gettingtoand Bathing Managing Feeding out of bed from the toilet incontinence and diapers

60

50

40

30

20

10

0

CreatedfromdatafromtheNationalAllianceforCaregivingandAARP.(141)

54%

42%40%

31% 32%

26%

31%

23%

31%

16%

31%

14%

Activity

FIGURe 6 PROPORTION OF CAReGIVeRS OF PeOPLe WITh ALzheIMeR’S AND OTheR DeMeNTIAS VS. CAReGIVeRS OF OTheR OLDeR PeOPLe WhO PROVIDe heLP WITh SPeCIFIC ACTIVITIeS OF DAILY LIVING, UNITeD STATeS, 2009

Percentage

32 Caregiving 2013 Alzheimer’s Disease Facts and Figures

hours of Unpaid Care and economic Value of Caregiving

In 2012, the 15.4 million family and other unpaid

caregivers of people with Alzheimer’s disease and other

dementias provided an estimated 17.5 billion hours of

unpaid care. This number represents an average of 21.9

hours of care per caregiver per week, or 1,139 hours of

care per caregiver per year.A16 With this care valued at

$12.33 per hour,A17 the estimated economic value of

care provided by family and other unpaid caregivers of

people with dementia was $216.4 billion in 2012.

Table6(pages34-35)showsthetotalhoursofunpaid

care as well as the value of care provided by family and

otherunpaidcaregiversfortheUnitedStatesandeach

state.UnpaidcaregiversofpeoplewithAlzheimer’s

and other dementias provide care valued at more than

$1billionineachof39states.Unpaidcaregiversineach

ofthefourmostpopulousstates—California,Florida,

NewYorkandTexas—providedcarevaluedatmore

than $14 billion.

Some studies suggest that family caregivers provide

even more intensive daily support to people who reach a

clinical threshold of dementia. For example, a recent

report from ADAMS found that family caregivers of

people who were categorized as having dementia spent

nine hours per day providing help to their relatives.(140)

Impact of Alzheimer’s Disease Caregiving

CaringforapersonwithAlzheimer’sandother

dementias poses special challenges. For example,

people with Alzheimer’s disease experience losses in

judgment,orientationandtheabilitytounderstandand

communicate effectively. Family caregivers must often

help people with Alzheimer’s manage these issues. The

personality and behavior of a person with Alzheimer’s

are affected as well, and these changes are often

among the most challenging for family caregivers.(142)

Individuals with dementia may also require increasing

levels of supervision and personal care as the disease

progresses. As these symptoms worsen with the

progression of a relative’s dementia, the care required of

family members can result in family caregivers’

experiencing increased emotional stress, depression,

impaired immune system response, health impairments,

lost wages due to disruptions in employment, and

50

45

40

35

30

25

20

15

10

5

0

32%

28%

43%

33%

23%

34%

4%2%

CreatedfromdatafromtheNationalAllianceforCaregivingandAARP.(141)

Duration Occasionally Less than 1 year 1–4years 5+years

CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeople

FIGURe 7 PROPORTION OF ALzheIMeR’S AND DeMeNTIA CAReGIVeRS VS. CAReGIVeRS OF OTheR OLDeR PeOPLe BY DURATION OF CAReGIVING, UNITeD STATeS, 2009

Percentage

33 2013 Alzheimer’s Disease Facts and Figures Caregiving

depleted income and finances.(147-152),A15The intimacy and

history of experiences and memories that are often part of

the relationship between a caregiver and care recipient may

also be threatened due to the memory loss, functional

impairment and psychiatric/behavioral disturbances that

can accompany the progression of Alzheimer’s.

Caregiver Emotional Well-Being

Although caregivers report some positive feelings about

caregiving, including family togetherness and the

satisfaction of helping others,A15 they also report high levels

of stress over the course of providing care:

•BasedonaLevelofCareIndexthatcombinedthe

number of hours of care and the number of ADL tasks

performed by the caregiver, fewer dementia caregivers in

the2009NAC/AARPsurveywereclassifiedinthelowest

level of burden compared with caregivers of people

without dementia (17 percent versus 31 percent,

respectively).(141)

•Sixty-onepercentoffamilycaregiversofpeoplewith

Alzheimer’s and other dementias rated the emotional

stressofcaregivingashighorveryhigh(Figure8).A15

•Mostfamilycaregiversreport“agoodamount”to“a

great deal” of caregiving strain concerning financial issues

(56 percent) and family relationships (53 percent).A15

•Earlierresearchinsmallersamplesfoundthatover

one-third(39percent)ofcaregiversofpeoplewith

dementia suffered from depression compared with

17percentofnon-caregivers.(153-154)Ameta-analysisof

research comparing caregivers affirmed this gulf in the

prevalence of depression between caregivers of people

withdementiaandnon-caregivers.(151) In the ADAMS

sample, 44 percent of caregivers of people with dementia

indicated depressive symptoms, compared with

27 percent of caregivers of people who had cognitive

impairment but no dementia.(140)

•Inthe2009NAC/AARPsurvey,caregiversmostlikelyto

indicate stress were women, older, residing with the care

recipient,whiteorHispanic,andbelievedtherewasno

choice in taking on the role of caregiver.(141)

•Whencaregiversreportbeingstressedbecauseofthe

impaired person’s behavioral symptoms, it increases the

chance that they will place the care recipient in a nursing

home.(138,141,155)

•Seventy-sevenpercentoffamilycaregiversofpeople

with Alzheimer’s disease and other dementias said that

they somewhat agree to strongly agree that there is no

“right or wrong” when families decide to place their

family member in a nursing home. Yet many such

caregivers experience feelings of guilt, emotional

upheaval and difficulties in adapting to the admission

transition (for example, interacting with care staff to

determine an appropriate care role for the family

member).(143,145,156-157),A15

•Demandsofcaregivingmayintensifyaspeoplewith

dementia near the end of life. In the year before the

person’s death, 59 percent of caregivers felt they were

“on duty” 24 hours a day, and many felt that caregiving

during this time was extremely stressful. One study of

end-of-lifecarefoundthat72percentoffamilycaregivers

said they experienced relief when the person with

Alzheimer’s disease or other dementia died.(145,158-159)

80

60

40

20

0

FIGURe 8 PROPORTION OF ALzheIMeR’S AND DeMeNTIA CAReGIVeRS WhO RePORT hIGh OR VeRY hIGh eMOTIONAL AND PhYSICAL STReSS DUe TO CAReGIVING

HightoveryhighNothightosomewhathigh

61%

39%43%

57%

CreatedfromdatafromtheAlzheimer’sAssociation.A15

Emotionalstressofcaregiving

Physicalstressofcaregiving

Stress

Percentage

34

higher health Care AD/D Caregivers hours of Unpaid Care Value of Unpaid Care Costs of Caregivers State (in thousands) (in millions) (in millions of dollars) (in millions of dollars)

Alabama 297 338 $4,171 $161

Alaska 33 37 $459 $26

Arizona 303 345 $4,250 $143

Arkansas 172 196 $2,419 $92

California 1,528 1,740 $21,450 $830

Colorado 231 264 $3,250 $121

Connecticut 175 200 $2,461 $132

Delaware 51 58 $715 $37

DistrictofColumbia 26 30 $368 $24

Florida 1,015 1,156 $14,258 $630

Georgia 495 563 $6,944 $235

Hawaii 64 73 $895 $38

Idaho 76 87 $1,067 $37

Illinois 584 665 $8,202 $343

Indiana 328 373 $4,604 $190

Iowa 135 154 $1,897 $81

Kansas 149 170 $2,099 $88

Kentucky 266 303 $3,731 $152

Louisiana 226 258 $3,180 $134

Maine 68 77 $951 $50

Maryland 282 321 $3,962 $184

Massachusetts 325 370 $4,557 $262

Michigan 507 577 $7,118 $291

Minnesota 243 277 $3,415 $157

Mississippi 203 231 $2,854 $115

TABLe 6 NUMBeR OF ALzheIMeR’S AND DeMeNTIA (AD/D) CAReGIVeRS, hOURS OF UNPAID CARe, eCONOMIC VALUe OF The CARe AND hIGheR heALTh CARe COSTS OF CAReGIVeRS, BY STATe, 2012*

Caregiving 2013 Alzheimer’s Disease Facts and Figures

35

higher health Care AD/D Caregivers hours of Unpaid Care Value of Unpaid Care Costs of Caregivers State (in thousands) (in millions) (in millions of dollars) (in millions of dollars)

Missouri 309 351 $4,333 $187

Montana 47 54 $663 $27

Nebraska 80 92 $1,128 $49

Nevada 135 153 $1,889 $67

NewHampshire 64 73 $905 $44

NewJersey 439 500 $6,166 $289

NewMexico 105 120 $1,480 $61

NewYork 1,003 1,142 $14,082 $726

NorthCarolina 437 497 $6,132 $245

NorthDakota 28 32 $400 $19

Ohio 589 671 $8,267 $361

Oklahoma 214 244 $3,004 $121

Oregon 167 191 $2,352 $96

Pennsylvania 667 760 $9,369 $447

RhodeIsland 53 60 $746 $38

SouthCarolina 287 327 $4,031 $157

South Dakota 36 41 $510 $22

Tennessee 414 472 $5,815 $229

Texas 1,294 1,474 $18,174 $665

Utah 137 156 $1,918 $60

Vermont 30 34 $416 $20

Virginia 443 504 $6,216 $241

Washington 323 368 $4,538 $190

WestVirginia 108 123 $1,520 $72

Wisconsin 189 215 $2,656 $120

Wyoming 27 31 $385 $17

U.S. Totals 15,410 17,548 $216,373 $9,121

*StatetotalsmaynotadduptotheU.S.totalduetorounding. Createdfromdatafromthe2009BRFSS,U.S.CensusBureau,CentersforMedicareandMedicaidServices,NationalAllianceforCaregiving, AARPandU.S.DepartmentofLabor.A14,A16,A17,A18

TABLe 6 (cont.)

2013 Alzheimer’s Disease Facts and Figures Caregiving

36 Caregiving 2013 Alzheimer’s Disease Facts and Figures

Caregiver Physical Health

For some caregivers, the demands of caregiving may

cause declines in their own health. Specifically, family

caregivers of people with dementia may experience

greater risk of chronic disease, physiological

impairments, increased health care utilization and

mortality than those who are not caregivers.(149)

Forty-threepercentofcaregiversofpeoplewith

Alzheimer’s disease and other dementias reported

that the physical impact of caregiving was high to very

high(Figure8).A15

General Health

Seventy-fivepercentofcaregiversofpeoplewith

Alzheimer’s disease and other dementias reported that

they were “somewhat” to “very concerned” about

maintaining their own health since becoming a

caregiver.A15 Dementia caregivers were more likely than

non-caregiverstoreportthattheirhealthwasfairor

poor.(149) Dementia caregivers were also more likely than

caregivers of other older people to say that caregiving

made their health worse.(141,160) Data from the 2010

BRFSScaregiversurveyfoundthat7percentof

dementia caregivers say the greatest difficulty of

caregiving is that it creates or aggravates their own

health problems compared with 2 percent of other

caregivers.(138) Other studies suggest that caregiving

tasks have the positive effect of keeping older

caregiversmorephysicallyactivethannon-caregivers.(161)

Physiological Changes

The chronic stress of caregiving is associated with

physiological changes that indicate risk of developing

chronic conditions. For example, a series of recent

studies found that under certain conditions some

Alzheimer’s caregivers were more likely to have

elevated biomarkers of cardiovascular disease risk and

impaired kidney function risk than those who were not

caregivers.(162-167) Overall, the literature remains fairly

consistent in suggesting that the chronic stress of

dementia care can have potentially negative influences

on caregiver health.

CaregiversofaspousewithAlzheimer’sorother

dementiasaremorelikelythanmarriednon-caregivers

to have physiological changes that may reflect declining

physical health, including high levels of stress

hormones,(168) reduced immune function,(147, 169) slow

wound healing,(170) increased incidence of hypertension,(171)

coronary heart disease(172) and impaired endothelial

function (the endothelium is the inner lining of the blood

vessels). Some of these changes may be associated with

an increased risk of cardiovascular disease.(173)

Health Care Utilization

The physical and emotional impact of dementia

caregiving is estimated to have resulted in $9.1 billion in

healthcarecostsintheUnitedStatesin2012.A18 Table 6

shows the estimated higher health care costs for

Alzheimer’s and dementia caregivers in each state.

Dementia caregivers were more likely to visit the

emergency department or be hospitalized in the

preceding six months if the care recipient was

depressed, had low functional status or had behavioral

disturbances than if the care recipient did not exhibit

these symptoms.(174)

Mortality

The health of a person with dementia may also affect the

caregiver’s risk of dying, although studies have reported

mixed findings on this issue. In one study, caregivers of

spouses who were hospitalized and had medical records

of dementia were more likely to die in the following year

than caregivers whose spouses were hospitalized but

did not have dementia, even after accounting for the

age of caregivers.(175)However,otherstudieshave

found that caregivers have lower mortality rates than

non-caregivers.(176-177) One study reported that higher

levels of stress were associated with higher rates of

mortalityinbothcaregiversandnon-caregivers.(177) These

findings suggest that it is high stress, not caregiving per

se, that increases the risk of mortality. Such results

emphasize that dementia caregiving is a complex

undertaking; simply providing care to someone with

Alzheimer’s disease or other dementia may not

consistently result in stress or negative health problems

37 2013 Alzheimer’s Disease Facts and Figures Caregiving

for caregivers. Instead, the stress of dementia caregiving

is influenced by a number of other factors, such as

dementia severity, how challenging the caregivers

perceive certain aspects of care to be, available social

support and caregiver personality. All of these factors are

important to consider when understanding the health

impact of caring for a person with dementia.(178)

Caregiver Employment

Among caregivers of people with Alzheimer’s disease

and other dementias, about 60 percent reported being

employedfull-orpart-time.(141)Employeddementia

caregiversindicatehavingtomakemajorchangesto

their work schedules because of their caregiving

responsibilities.Sixty-fivepercentsaidtheyhadtogoin

late, leave early or take time off, and 20 percent had to

takealeaveofabsence.Otherwork-relatedchanges

pertaining to caregiving are summarized in Figure 9.A15

Interventions that May Improve Caregiver Outcomes

Intervention strategies to support family caregivers

of people with Alzheimer’s disease have been

developed and evaluated. The types and focus of these

interventionsaresummarizedinTable7(page38).(179)

In general, these interventions aim to lessen negative

aspects of caregiving with the goal of improving health

outcomes of dementia caregivers. Methods used to

accomplishthisobjectiveincludeenhancingcaregiver

strategiestomanagedementia-relatedsymptoms,

bolstering resources through enhanced social support

and providing relief/respite from daily care demands.

Desired outcomes of these interventions include

decreased caregiver stress and depression and delayed

nursing home admission of the person with dementia.

FIGURe 9 eFFeCT OF CAReGIVING ON WORk: WORk-ReLATeD ChANGeS AMONG CAReGIVeRS OF PeOPLe WITh ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS

Hadtogoin late/leave early/

take time off

Effect

100

80

60

40

20

0

CreatedfromdatafromtheAlzheimer’sAssociation.A15

Hadtotakea leave of absence

Hadtogofromworkingfull-to part-time

Hadtotakealess demandingjob

Hadtoturn down a

promotion

Lostjob benefits

Hadtogiveupworking entirely

Choseearly retirement

Saw work performance suffer to point of possible

dismissal

Percentage

8%9%9%10%11%11%13%20%

65%

38 Caregiving 2013 Alzheimer’s Disease Facts and Figures

Characteristicsofeffectivecaregiverinterventions

include programs that are administered over long

periods of time, interventions that approach dementia

care as an issue for the entire family, and interventions

that train dementia caregivers in the management

of behavioral problems.(180-182)Multidimensional

interventions appear particularly effective. These

approaches combine individual consultation, family

sessions and support, and ongoing assistance to help

dementia caregivers manage changes that occur as

the disease progresses. Two examples of successful

multidimensional interventions are the New York

UniversityCaregiverIntervention(183-184) and the

ResourcesforEnhancingAlzheimer’sCaregiver

Health(REACH)IIprograms.(152,179,185-187)

Although less consistent in their demonstrated benefits,

support group strategies and respite services such as

adult day programs may offer encouragement or relief

to enhance caregiver outcomes. The effects of

pharmacological therapies for treating symptoms of

dementia (for example, acetylcholinesterase inhibitors,

memantine, antipsychotics and antidepressants) also

appear to modestly reduce caregiver stress.(188)

Several sources (179,182,189-195) recommend that caregiver

services identify “the risk factors and outcomes unique

to each caregiver”(182) when selecting caregiver

interventions. More work is needed, however, in testing

the efficacy of these support programs among different

caregiver groups in order to ensure their benefits for

caregivers across diverse clinical, racial, ethnic,

socioeconomic and geographic contexts.(196)

Type of Intervention Description

Includes a structured program that provides information about the disease, resources

and services and about how to expand skills to effectively respond to symptoms of

thedisease(i.e.,cognitiveimpairment,behavioralsymptomsandcare-relatedneeds).

Includes lectures, discussions and written materials and is led by professionals with

specialized training.

Focuses on building support among participants and creating a setting in which to discuss

problems,successesandfeelingsregardingcaregiving.Groupmembersrecognizethat

others have similar concerns. Interventions provide opportunities to exchange ideas and

strategiesthataremosteffective.Thesegroupsmaybeprofessionallyorpeer-led.

Involves a relationship between the caregiver and a trained therapy professional. Therapists

mayteachsuchskillsasself-monitoring;challengenegativethoughtsandassumptions;help

developproblem-solvingabilities;andfocusontimemanagement,overload,managementof

emotionsandre-engagementinpleasantactivitiesandpositiveexperiences.

Includes various combinations of interventions such as psychoeducational, supportive,

psychotherapy and technological approaches. These interventions are led by skilled

professionals.

Psychoeducational

Supportive

Psychotherapy

Multicomponent

CreatedfromdatafromSörensenetal.(179)

TABLe 7 TYPe AND FOCUS OF CAReGIVeR INTeRVeNTIONS

39 2013 Alzheimer’s Disease Facts and Figures Caregiving

pAid cAregivers

Direct-Care Workers for People with Alzheimer’s Disease and Other Dementias

Direct-careworkers,suchasnurseaides,homehealth

aidesandpersonal-andhome-careaides,comprisethe

majorityoftheformalhealthcaredeliverysystemfor

older adults (including those with Alzheimer’s disease

and other dementias). In nursing homes, nursing

assistantsmakeupthemajorityofstaffwhowork

with cognitively impaired residents.(197-198) Most nursing

assistants are women, an increasing number of whom

are diverse in terms of ethnic or racial background.

Nursing assistants help with bathing, dressing,

housekeeping, food preparation and other activities.

Direct-careworkershavedifficultjobs,andtheymay

not receive the training necessary to provide dementia

care.(197, 199)Onereviewfoundthatdirect-careworkers

received, on average, 75 hours of training that included

little focus on issues specific or pertinent to dementia

care.(197)Turnoverratesarehighamongdirect-care

workers, and recruitment and retention are persistent

challenges.(137) An additional challenge is that while

direct-careworkersareoftenattheforefrontof

dementia care delivery in nursing homes, these staff

are unlikely to receive adequate dementia training due

to insufficient administrative support. Reviews have

shown that staff training programs to improve the

quality of dementia care in nursing homes have

modest, positive benefits.(200)

Shortage of Geriatric health Care Professionals in the United States

Professionalswhomayreceivespecialtrainingin

caring for older adults include physicians, physician

assistants, nurses, social workers, pharmacists, case

workers and others.(137)ItisprojectedthattheUnited

States will need an additional 3.5 million health care

professionalsby2030justtomaintainthecurrentratio

of health care professionals to the older population.(137)

The need for health care professionals trained in

geriatrics is escalating, but few providers choose this

careerpath.ItisestimatedthattheUnitedStateshas

approximately half the number of certified geriatricians

that it currently needs.(201)In2010,therewere4,278

physicianspracticinggeriatricmedicineintheUnited

States. An estimated 36,000 geriatricians will be

needed to adequately meet the needs of older adults

intheUnitedStatesby2030.(137)Otherhealth-related

professions also have low numbers of geriatric

specialists relative to the population’s needs.

According to the Institute of Medicine, less than

1 percent of registered nurses, physician assistants

and pharmacists identify themselves as specializing in

geriatrics.(137) Similarly, while 73 percent of social

workers have clients age 55 and older and between

7.6 and 9.4 percent of social workers are employed in

long-termcaresettings,only4percenthaveformal

certification in geriatric social work.(137)

use And costs of heAlth cAre, long-term cAre And hospice

costs of cAring for people with Alzheimer’s And other

dementiAs will soAr from An estimAted $203 billion this

yeAr to A projected $1.2 trillion per yeAr by 2050.

203 B$

1.2T$

2013 2050

41 2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

Twenty-ninepercentofolderindividualswith

Alzheimer’s disease and other dementias who have

Medicare also have Medicaid coverage, compared

with 11 percent of individuals without dementia.(121)

Medicaidpaysfornursinghomeandotherlong-term

care services for some people with very low income

and low assets, and the high use of these services

by people with dementia translates into high costs

fortheMedicaidprogram.In2008,averageMedicaid

payments per person for Medicare beneficiaries

age 65 and older with Alzheimer’s disease and

other dementias were 19 times as great as average

Medicaid payments for Medicare beneficiaries without

Alzheimer’sdiseaseandotherdementias($10,538per

person for individuals with dementia compared with

$549forindividualswithoutdementia;Table8).(121)

As the number of people with Alzheimer’s disease and other dementias grows, spending for their care will increase dramatically. For people with these conditions,aggregatepaymentsforhealthcare,long-termcareandhospice areprojectedtoincreasefrom$203billionin2013to$1.2trillionin2050(in2013dollars).A19 Medicare and Medicaid cover about 70 percent of the costs of care.

totAl pAyments for heAlth cAre, long-term cAre And hospice

In addition to Medicare and Medicaid, several other

sources contribute to payments for costs of care. (All

costs that follow are reported in 2012 dollars,A20 unless

otherwiseindicated.)Table8reportstheaverage

per-personpaymentsforhealthcareandlong-term

care services for Medicare beneficiaries with

Alzheimer’sdiseaseandotherdementias.In2008,

totalper-personpaymentsfromallsourcesforhealth

careandlong-termcareforMedicarebeneficiarieswith

Alzheimer’s and other dementias were three times as

great as payments for other Medicare beneficiaries in

the same age group ($45,657 per person for those

with dementia compared with $14,452 per person for

those without dementia).(121), A21

payment source disease and Overall Community-Dwelling Residential Facility other dementias

beneficiaries with Alzheimer’s disease beneficiaries and other dementias by place of residence without Alzheimer’s

Medicare $20,638 $18,380 $23,792 $7,832

Medicaid 10,538 232 24,942 549

Uncompensated 284 408 112 320

HMO 1,036 1,607 236 1,510

Privateinsurance 2,355 2,588 2,029 1,584

Other payer 943 171 2,029 149

Out-of-pocket 9,754 3,297 18,780 2,378

Total* 45,657 26,869 71,917 14,452

TABLe 8 AverAge AnnuAl Per-Person PAyments for HeAltH CAre And long-term CAre serviCes,

mediCAre BenefiCiAries Age 65 And older, witH And witHout AlzHeimer’s diseAse And otHer

dementiAs And By PlACe of residenCe, in 2012 dollArs

*Paymentsfromsourcesdonotequaltotalpaymentsexactlyduetotheeffectofpopulationweighting.PaymentsforallbeneficiarieswithAlzheimer’sdiseaseandotherdementiasincludepaymentsforcommunity-dwellingandfacility-dwellingbeneficiaries.

CreatedfromunpublisheddatafromtheMedicareCurrentBeneficiarySurveyfor2008.(121)

42

Total payments for 2013 are estimated at $203 billion,

including $142 billion for Medicare and Medicaid

combined in 2013 dollars (Figure 10). These figures are

derivedfromamodeldevelopedbyTheLewinGroup

usingdatafromtheMedicareCurrentBeneficiary

SurveyandTheLewinGroup’sLong-TermCare

Financing Model.A19

use And costs of heAlth cAre services

PeoplewithAlzheimer’sdiseaseandotherdementias

have more than three times as many hospital stays

per year as other older people.(121) Moreover, the use

of health care services for people with other serious

medical conditions is strongly affected by the presence

or absence of dementia. In particular, people with

coronary heart disease, diabetes, chronic kidney

disease, chronic obstructive pulmonary disease, stroke

Use and Costs of health Care, Long-Term Care and hospice 2013 Alzheimer’s Disease Facts and Figures

9%

6% 5%

*All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s disease were used to calculate percentages. The remaining 37 percent of hospitalizations were due to other reasons.

CreatedfromdatafromRudolphetal.(202)

30

25

20

15

10

5

0

Syncope,fall, Ischemicheart Gastrointestinal Pneumonia Delirium,mental trauma disease disease status change

26%

17%

Reasons for Hospitalization

Percentage

FIGURe 11 ReASONS FOR hOSPITALIzATION OF PeOPLe WITh ALzheIMeR’S DISeASe:

PeRCeNTAGe OF hOSPITALIzeD PeOPLe BY ADMITTING DIAGNOSIS*

Total cost: $203 Billion (B)

*Data are in 2013 dollars.

CreatedfromdatafromtheapplicationofTheLewinModelA19 to data from theMedicareCurrentBeneficiarySurveyfor2008.(121) “Other” payment sources include private insurance, health maintenance organizations, other managed care organizations and uncompensated care.

Medicare $107 B, 53%

Medicaid $35 B, 17%

Out-of-pocket $34 B, 17%

Other $27 B, 13%

FIGURe 10 AGGReGATe COSTS OF CARe BY PAYeR FOR AMeRICANS AGe 65 AND OLDeR WITh ALzheIMeR‘S DISeASe AND OTheR DeMeNTIAS, 2013*

• • • •

43

or cancer who also have Alzheimer’s and other

dementias have higher use and costs of health care

services than people with these medical conditions

but no coexisting dementia.

Use of health Care Services

Older people with Alzheimer’s disease and other

dementias have more hospital stays, skilled nursing

facility stays and home health care visits than other

older people.

•Hospital.In2008,therewere780hospitalstaysper

1,000 Medicare beneficiaries age 65 and older with

Alzheimer’s disease or other dementias compared

with 234 hospital stays per 1,000 Medicare

beneficiaries without these conditions.(121) The most

common reasons for hospitalization of people with

Alzheimer’s disease include syncope, fall and trauma

(26 percent), ischemic heart disease (17 percent) and

gastrointestinal disease (9 percent) (Figure 11).(202)

•Skilled nursing facility. Skilled nursing facilities

provide direct medical care that is performed or

supervised by registered nurses, such as giving

intravenous fluids, changing dressings and

administering tube feedings.(203)In2008,there

were 349 skilled nursing facility stays per 1,000

beneficiaries with Alzheimer’s and other dementias

compared with 39 stays per 1,000 beneficiaries for

people without these conditions.(121)

•Home health care.In2008,23percentofMedicare

beneficiaries age 65 and older with Alzheimer’s

disease and other dementias had at least one home

health visit during the year, compared with

10 percent of Medicare beneficiaries without

Alzheimer’s and other dementias.(107)

2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

Costs of health Care Services

With the exception of prescription medications,

averageper-personpaymentsforallotherhealth

care services (hospital, physician and other medical

provider, nursing home, skilled nursing facility and

home health care) were higher for Medicare

beneficiaries with Alzheimer’s disease and other

dementias than for other Medicare beneficiaries in

the same age group (Table 9).(121) The fact that only

payments for prescription drugs are lower for those

with Alzheimer’s and other dementias underscores

the lack of effective treatments available to those

with dementia.

Beneficiaries with Beneficiaries without Alzheimer’s Alzheimer’s Disease and Disease and Other Dementias Other Dementias

Inpatienthospital $10,293 $4,138

Medical provider* 6,095 4,041

Skilled nursing facility 3,955 460

Nursinghome 18,353 816

Hospice 1,821 178

Homehealth 1,460 471

Prescriptionmedications** 2,787 2,840

*“Medical provider” includes physician, other medical provider and laboratory services, and medical equipment and supplies.**Information on payments for prescription drugs is only available for people who were living in the community; that is, not in a nursing home or assisted living facility.

CreatedfromunpublisheddatafromtheMedicareCurrentBeneficiarySurvey for2008.(121)

TABLe 9 AVeRAGe ANNUAL PeR-PeRSON PAYMeNTS FOR heALTh CARe SeRVICeS PROVIDeD TO MeDICARe BeNeFICIARIeS AGe 65 AND OLDeR WITh AND WIThOUT ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS

44 Use and Costs of health Care, Long-Term Care and hospice 2013 Alzheimer’s Disease Facts and Figures

TABLe 10 SPeCIFIC COexISTING MeDICAL CONDITIONS AMONG MeDICARe BeNeFICIARIeS AGe 65 AND OLDeR WITh ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS, 2009

Percentage of People with Alzheimer’s Disease and Other Dementias Who Also had Coexisting Condition Coexisting Medical Condition

Coronaryheartdisease 30%

Diabetes 29%

Congestiveheartfailure 22%

Chronickidneydisease 17%

Chronicobstructivepulmonarydisease 17%

Stroke 14%

Cancer 9% CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(107)

CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(107)

FIGURe 12 hOSPITAL STAYS PeR 1,000 BeNeFICIARIeS AGe 65 AND OLDeR WITh SPeCIFIeD COexISTING

MeDICAL CONDITIONS, WITh AND WIThOUT ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS, 2009

With Alzheimer’s disease and other dementias Without Alzheimer’s disease and other dementiasHospitalstays

Condition Chronic Congestive Chronic Coronary Stroke Diabetes Cancer kidney heart failure obstructive artery disease disease pulmonary disease

1,042

801

1,002948

998

753

897

592

876

656

835

474

776

477

1,200

1,000

800

600

400

200

0

Impact of Coexisting Medical Conditions on Use and Costs of health Care Services

Medicare beneficiaries with Alzheimer’s disease and

other dementias are more likely than those without

dementia to have other chronic conditions.(107)

Table 10 reports the proportion of people with

Alzheimer’s disease and other dementias who have

certain coexisting medical conditions. In 2009,

30 percent of Medicare beneficiaries age 65 and

older with dementia also had coronary heart disease,

29 percent also had diabetes, 22 percent also had

congestive heart failure, 17 percent also had chronic

kidney disease and 17 percent also had chronic

obstructive pulmonary disease.(107)

PeoplewithAlzheimer’sandotherdementiasin

addition to other serious coexisting medical conditions

are more likely to be hospitalized than people with the

same coexisting medical conditions but without

dementia (Figure 12).(107)

45

Similarly, Medicare beneficiaries who have Alzheimer’s

and other dementias in addition to another serious

coexisting medical condition have higher average

per-personpaymentsformosthealthcareservices

than Medicare beneficiaries who have the same

medical conditions without dementia. Table 11 shows

theaverageper-persontotalMedicarepaymentsand

averageper-personMedicarepaymentsforhospital,

physician, skilled nursing facility, home health and

2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

hospice care for beneficiaries with other serious

medical conditions who either do or do not have

Alzheimer’s and other dementias.(107) Medicare

beneficiaries with a serious medical condition and

dementiahadhigheraverageper-personpayments

than Medicare beneficiaries with the same medical

condition but without dementia, with the exceptions

of hospital care and total Medicare payments for

beneficiaries with congestive heart failure.

Average per-person medicare payment

total Skilled medicare hospital Physician Nursing home hospice payments Care Care Facility Care health Care Care

Selected Medical Condition by Alzheimer’s Disease/Dementia (AD/D) Status

TABLe 11 AVeRAGe ANNUAL PeR-PeRSON PAYMeNTS BY TYPe OF SeRVICe AND COexISTING MeDICAL CONDITION FOR MeDICARe BeNeFICIARIeS AGe 65 AND OLDeR, WITh AND WIThOUT ALzheIMeR’S DISeASe AND OTheR DeMeNTIAS, 2009, IN 2012 DOLLARS*

coronary heart disease

With AD/D 27,286 10,312 1,718 4,344 2,721 2,347

Without AD/D 16,924 7,410 1,314 1,324 1,171 342

diabetes

With AD/D 26,627 9,813 1,608 4,211 2,802 2,121

Without AD/D 14,718 6,048 1,132 1,203 1,110 240

congestive heart failure

With AD/D 26,149 11,712 1,773 4,816 2,848 2,943

Without AD/D 30,034 11,991 1,772 2,610 2,244 833

chronic kidney disease

With AD/D 32,190 12,927 1,902 4,845 2,658 2,560

Without AD/D 24,767 10,834 1,665 1,999 1,646 530

chronic obstructive pulmonary disease

With AD/D 29,660 11,521 1,811 4,748 2,821 2,650

Without AD/D 20,260 9,029 1,488 1,730 1,516 665

stroke

With AD/D 27,774 10,160 1,669 4,557 2,578 2,758

Without AD/D 19,940 7,875 1,419 2,336 1,891 652

cancer

With AD/D 25,559 9,135 1,567 3,653 2,221 2,890

Without AD/D 16,727 6,198 1,202 989 788 592 *ThistabledoesnotincludepaymentsforallkindsofMedicareservices,andasaresulttheaverageper-person paymentsforspecificMedicareservicesdonotsumtothetotalper-personMedicarepayments.

CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(107)

Medical Condition by Alzheimer’s Disease/Dementia (AD/D) Status

46

PeoplewithAlzheimer’sandotherdementiasmakeup

a large proportion of all elderly people who receive

nonmedical home care, adult day services and nursing

home care.

•Home care. According to state home care programs

inConnecticut,FloridaandMichigan,morethan

one-third(about37percent)ofolderpeoplewho

receive primarily nonmedical home care services,

such as personal care and homemaker services, have

cognitive impairment consistent with dementia.(206-208)

•Adult day services. At least half of elderly attendees

at adult day centers have dementia.(209-210)

•Assisted living and residential care.Forty-twopercent

of residents in assisted living and residential care

facilities had Alzheimer’s disease and other

dementias in 2010.(211)

•Nursing home care. Of all nursing home residents,

68percenthavesomedegreeofcognitive

impairment.Twenty-sevenpercenthaveverymildto

mild cognitive impairment, and 41 percent have

moderate to severe cognitive impairment

(Table 12).(212) Of all Medicare beneficiaries age 65

and older living in a nursing home, 64 percent have

Alzheimer’s disease and other dementias.(121)

•Alzheimer’s special care units. An Alzheimer’s special

care unit is a separate unit in a nursing home that has

special services for individuals with Alzheimer’s and

other dementias. Nursing homes had a total of

79,937bedsinAlzheimer’sspecialcareunitsinJune

2012.(213) These Alzheimer’s special care unit beds

accounted for 72 percent of all special care unit beds

and 5 percent of all nursing home beds at that time.

The number of nursing home beds in Alzheimer’s

specialcareunitsincreasedinthe1980sbuthas

decreased since 2004, when there were 93,763 beds

in such units.(214)

Use and Costs of health Care, Long-Term Care and hospice 2013 Alzheimer’s Disease Facts and Figures

use And costs of long-term cAre services

An estimated 60 to 70 percent of older adults with

Alzheimer’s disease and other dementias live in the

communitycomparedwith98percentofolder

adults without Alzheimer’s disease and other

dementias.(121, 204) Of those with dementia who live in

the community, 75 percent live with someone and the

remaining 25 percent live alone.(121)Peoplewith

Alzheimer’s disease and other dementias generally

receive more care from family members and other

unpaid caregivers as their disease progresses. Many

people with dementia also receive paid services at

home; in adult day centers, assisted living facilities or

nursing homes; or in more than one of these settings

at different times in the often long course of their

illness.Giventhehighaveragecostsoftheseservices

(adult day services, $70 per day;(204) assisted living,

$42,600 per year;(204) andnursinghomecare,$81,030

to $90,520 per year),(204) individuals often spend down

their income and assets and eventually qualify for

Medicaid. Medicaid is the only public program that

covers the long nursing home stays that most people

with dementia require in the late stages of their illnesses.

Use of Long-Term Care Services by Setting

Most people with Alzheimer’s disease and other

dementias who live at home receive unpaid help from

family members and friends, but some also receive

paidhomeandcommunity-basedservices,suchas

personal care and adult day care. A study of older

peoplewhoneededhelptoperformdailyactivities—

such as dressing, bathing, shopping and managing

money—foundthatthosewhoalsohadcognitive

impairment were more than twice as likely as those

who did not have cognitive impairment to receive paid

home care.(205) In addition, those who had cognitive

impairment and received paid services used almost

twice as many hours of care monthly as those who did

not have cognitive impairment.(205)

47 2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

Percentage of Residents at each Stage of Cognitive Impairment**

None Very Mild/Mild Moderate/Severe

Alabama 52,312 29 27 44

Alaska 1,328 32 29 39

Arizona 41,703 48 24 28

Arkansas 33,723 23 29 48

California 259,778 36 26 38

Colorado 40,681 33 29 39

Connecticut 63,252 39 25 36

Delaware 9,842 35 28 37

DistrictofColumbia 5,448 36 26 38

Florida 212,553 41 23 36

Georgia 68,186 16 23 61

Hawaii 8,574 25 22 53

Idaho 12,558 34 26 40

Illinois 169,385 29 32 39

Indiana 84,063 37 29 34

Iowa 48,471 22 31 47

Kansas 35,871 24 31 45

Kentucky 50,942 32 24 44

Louisiana 43,523 25 26 49

Maine 18,802 37 25 38

Maryland 65,917 40 23 37

Massachusetts 103,135 36 23 41

Michigan 104,790 33 26 41

Minnesota 70,474 30 30 40

Mississippi 29,306 23 29 48

Missouri 78,350 31 31 39

Montana 10,795 24 30 46

Nebraska 27,007 28 30 42

Nevada 13,630 43 26 31

NewHampshire 15,831 34 24 42

NewJersey 120,300 42 24 34

NewMexico 13,423 32 28 40

TABLe 12 COGNITIVe IMPAIRMeNT IN NURSING hOMe ReSIDeNTS, BY STATe, 2009

State Total Nursing home Residents*

48 Use and Costs of health Care, Long-Term Care and hospice 2013 Alzheimer’s Disease Facts and Figures

New York 232,754 35 25 40

NorthCarolina 89,429 35 24 42

North Dakota 10,609 22 31 47

Ohio 190,576 30 27 42

Oklahoma 37,263 29 31 40

Oregon 27,099 37 29 34

Pennsylvania 189,524 33 28 40

RhodeIsland 17,388 32 28 40

SouthCarolina 39,616 29 23 48

South Dakota 11,347 20 31 49

Tennessee 71,723 26 27 48

Texas 192,450 19 30 51

Utah 17,933 38 27 34

Vermont 7,106 31 24 45

Virginia 73,685 34 26 39

Washington 57,335 33 28 39

WestVirginia 21,815 37 21 42

Wisconsin 73,272 35 27 38

Wyoming 4,792 19 28 54

U.S. Total 3,279,669 32 27 41

Percentage of Residents at each Stage of Cognitive Impairment**

None Very Mild/Mild Moderate/Severe

*These figures include all individuals who spent any time in a nursing home in 2009.**Percentagesforeachstatemaynotsumto100becauseofrounding.

CreatedfromdatafromtheU.S.DepartmentofHealthandHumanServices.(212)

State Total Nursing home Residents*

TABLe 12 (cont.) COGNITIVe IMPAIRMeNT IN NURSING hOMe ReSIDeNTS, BY STATe, 2009

49

•Home care. In 2011, the average cost for a paid

nonmedical home health aide was $21 per hour, or

$168foraneight-hourday.(204)

•Adult day centers. In 2011, the average cost of adult

dayserviceswas$70perday.Ninety-fivepercentof

adult day centers provided care for people with

Alzheimer’s disease and other dementias, and

2 percent of these centers charged an additional fee

for these clients.(204)

•Assisted living. In 2011, the average cost for basic

services in an assisted living facility was $3,550 per

month,or$42,600peryear.Seventy-twopercentof

assisted living facilities provided care to people with

Alzheimer’s disease and other dementias, and

52 percent had a specific unit for people with

Alzheimer’s and other dementias. In facilities that

charged a different rate for individuals with dementia,

theaverageratewas$4,807permonth,or$57,684

per year, for this care.(204)

•Nursing homes. In 2011, the average cost for a private

roominanursinghomewas$248perday,or$90,520

peryear.Theaveragecostofasemi-privateroomin

anursinghomewas$222perday,or$81,030per

year. Approximately80percentofnursinghomesthat

provide care for people with Alzheimer’s disease

charge the same rate regardless of whether the

individual has Alzheimer’s. In the few nursing homes

that charged a different rate, the average cost for a

private room for an individual with Alzheimer’s disease

was $13 higher ($261 per day, or $95,265 per year)

andtheaveragecostforasemi-privateroomwas

$8higher($230perday,or$83,950peryear).(204)

Fifty-fivepercentofnursinghomesthatprovide

care for people with Alzheimer’s disease and

other dementias had separate Alzheimer’s special

care units.(204)

2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

Despite increasing demand for nursing home and

long-termacutehospitalcareservices,therehavebeen

a number of restrictions on adding new facilities and

increasing the number of beds in existing facilities. In

addition,theMedicare,MedicaidandSCHIP(State

Children’sHealthInsuranceProgram)ExtensionActof

2007issuedathree-yearmoratoriumonthedesignation

ofnewlong-termcarehospitalsandincreasesin

Medicare-certifiedbedsforexistinglong-termcare

hospitals.(215)Long-termcarehospitalsareacutecare

hospitalsthatservepatientswhohavelong-termacute

medical care needs, with average lengths of hospital

stay of more than 25 days.(216)Patientsareoften

transferred from the intensive care units of acute care

hospitalstolong-termcarehospitalsformedicalcare

related to rehabilitation services, respiratory therapy and

pain management. This moratorium was in response to

the need for Medicare to develop criteria for patients

admittedtolong-termcarehospitalswithMedicare

coverage, due to continued growth in the number of

long-termcarefacilitiesandbeds.Themoratorium

expiredonDecember28,2012.(215, 217) In 2011,

certificate-of-needprogramswereinplacetoregulate

nursing home beds in 37 states, and a number of these

stateshadimplementedacertificate-of-need

moratorium on the number of beds and/or facilities.(218)

Costs of Long-Term Care Services

Costsarehighforcareprovidedathomeorinanadult

day center, assisted living facility or nursing home. The

following estimates are for all users of these services.

The only exception is the cost of Alzheimer’s special

care units in nursing homes, which only applies to the

people with Alzheimer’s disease and other dementias

who are in these units.

50

qualify for Medicaid must spend all of their Social

Security income and any other monthly income, except

for a very small personal needs allowance, to pay for

nursing home care. Medicaid only makes up the

difference if the nursing home resident cannot pay the

full cost of care or has a financially dependent spouse.

The federal and state governments share in managing

and funding the program, and states differ greatly in

the services covered by their Medicaid programs.

Medicaid plays a critical role for people with dementia

whocannolongeraffordtopayforlong-termcare

expensesontheirown.In2008,58percentof

Medicaidspendingonlong-termcarewasallocatedto

institutional care, and the remaining 42 percent was

allocatedtohomeandcommunity-basedservices.(222)

Total Medicaid spending for people with Alzheimer’s

diseaseandotherdementiasisprojectedtobe

$35 billion in 2013.A19 About half of all Medicaid

beneficiaries with Alzheimer’s disease and other

dementias are nursing home residents, and the rest

live in the community.(224) Among nursing home

residents with Alzheimer’s disease and other

dementias, 51 percent rely on Medicaid to help pay for

their nursing home care.(224)

In2008,totalper-personMedicaidpaymentsfor

Medicare beneficiaries age 65 and older with

Alzheimer’s and other dementias were 19 times as

great as Medicaid payments for other Medicare

beneficiaries. Much of the difference in payments for

beneficiaries with Alzheimer’s and other dementias is

duetothecostsassociatedwithlong-termcare

(nursing homes and other residential care facilities,

such as assisted living facilities) and the greater

percentage of people with dementia who are eligible

for Medicaid. Medicaid paid $24,942 per person for

Medicare beneficiaries with Alzheimer’s and other

dementiaslivinginalong-termcarefacilitycompared

with $232 for those with the diagnosis living in the

community and $549 for those without the diagnosis

(Table8,page41).(121)

Use and Costs of health Care, Long-Term Care and hospice 2013 Alzheimer’s Disease Facts and Figures

Affordability of Long-Term Care Services

Few individuals with Alzheimer’s disease and other

dementiashavesufficientlong-termcareinsuranceor

canaffordtopayout-of-pocketforlong-termcare

services for as long as the services are needed.

•Incomeandassetdataarenotavailableforpeople

with Alzheimer’s and other dementias specifically,

but 50 percent of Medicare beneficiaries had

incomes of $22,276 or less, and 25 percent had

incomesof$13,418orlessin2010(in2012dollars).

TwohundredpercentoftheU.S.CensusBureau’s

poverty threshold was $21,576 for one person age

65 and older and $27,192 for a family of two, with

the head of household age 65 and older.(219-220)

•FiftypercentofMedicarebeneficiarieshad

retirement accounts of $2,203 or less, 50 percent

hadfinancialassetsof$31,849orless,and

50 percent had total savings of $55,516 or less,

equivalent to less than one year of nursing home

care in 2010 (in 2012 dollars).(219)

Long-Term Care Insurance

In2010,about7.3millionpeoplehadlong-termcare

insurance policies.(221)Privatehealthandlong-termcare

insurance policies funded only about 7 percent of total

long-termcarespendingin2009,representing

$18.4billionofthe$263billion(in2012dollars)in

long-termcarespending.(222) Theprivatelong-termcare

insurance market has decreased substantially since

2010,however,withfivemajorinsurancecarriers

either exiting the market or substantially increasing

premiums, making policies unaffordable for many

individuals.(223)

Medicaid Costs

Medicaidcoversnursinghomecareandlong-term

care services in the community for individuals who

meet program requirements for level of care, income

and assets. To receive coverage, beneficiaries must

have low incomes. Most nursing home residents who

51 2013 Alzheimer’s Disease Facts and Figures Use and Costs of health Care, Long-Term Care and hospice

out-of-pocket costs for heAlth cAre And long-term cAre services

Despite other sources of financial assistance,

individuals with Alzheimer’s disease and other

dementiasstillincurhighout-of-pocketcosts.These

costs are for Medicare and other health insurance

premiums and for deductibles, copayments and

services not covered by Medicare, Medicaid or

additional sources of support.

In2008,Medicarebeneficiariesage65andolderwith

Alzheimer’s and other dementias paid $9,754 out of

pocket,onaverage,forhealthcareandlong-termcare

servicesnotcoveredbyothersources(Table8,

page 41).(121) Averageper-personout-of-pocket

payments were highest ($3,297 per person) for

individuals living in nursing homes and assisted living

facilities and were almost six times as great as the

averageper-personpaymentsforindividualswith

Alzheimer’s disease and other dementias living in

the community.(121)In2013,out-of-pocketspending

for individuals with Alzheimer’s and other dementias

is expected to total an estimated $34 billion (Figure 10,

page 42).A19

BeforeimplementationoftheMedicarePartD

PrescriptionDrugBenefitin2006,out-of-pocket

expenses were increasing annually for Medicare

beneficiaries.(225)In2003,out-of-pocketcostsfor

prescription medications accounted for about

one-quarteroftotalout-of-pocketcostsforall

Medicare beneficiaries age 65 and older.(226) The

MedicarePartDPrescriptionDrugBenefithashelped

toreduceout-of-pocketcostsforprescriptiondrugs

for many Medicare beneficiaries, including

beneficiaries with Alzheimer’s and other dementias.(227)

Sixty percent of all Medicare beneficiaries were

enrolledinaMedicarePartDplanin2011,andthe

averagemonthlypremiumforMedicarePartDwas

$39 (range: $15 to $132).(227) As noted earlier, however,

themostexpensivecomponentofout-of-pocketcosts

for people with Alzheimer’s and other dementias is

nursing home and other residential care.

use And costs of hospice cAre

Hospicesprovidemedicalcare,painmanagementand

emotional and spiritual support for people who are

dying, including people with Alzheimer’s disease and

otherdementias.Hospicesalsoprovideemotionaland

spiritual support and bereavement services for families

of people who are dying. The main purpose of hospice

care is to allow individuals to die with dignity and

without pain and other distressing symptoms that

often accompany terminal illness. Individuals can

receive hospice care in their homes, assisted living

residences or nursing homes. Medicare is the primary

source of payment for hospice care, but private

insurance, Medicaid and other sources also pay for

hospice care.

In 2009, 6 percent of all people admitted to hospices

intheUnitedStateshadaprimaryhospicediagnosisof

Alzheimer’s disease (61,146 people).(228) An additional

11 percent of all people admitted to hospices in the

UnitedStateshadaprimaryhospicediagnosisof

non-Alzheimer’sdementia(119,872people).(228)

Hospicelengthofstayhasincreasedoverthepast

decade. The average length of stay for hospice

beneficiaries with a primary hospice diagnosis of

Alzheimer’sdiseaseincreasedfrom67daysin1998to

106 days in 2009.(228)The average length of stay for

hospice beneficiaries with a primary diagnosis of

non-Alzheimer’sdementiaincreasedfrom57daysin

1998to92daysin2009.(228)Averageper-person

hospice care payments across all beneficiaries with

Alzheimer’s disease and other dementias were 10

timesasgreatasaverageper-personpaymentsforall

otherMedicarebeneficiaries($1,821perperson

comparedwith$178perperson).(121)

projections for the future

Totalpaymentsforhealthcare,long-termcareand

hospice for people with Alzheimer’s disease and

otherdementiasareprojectedtoincreasefrom$203

billion in 2013 to $1.2 trillion in 2050 (in 2013 dollars).

Thisdramaticriseincludesasix-foldincreasein

government spending under Medicare and Medicaid

andafive-foldincreaseinout-of-pocketspending.A19

speciAl report: long-distAnce cAregivers

rAn estimAted 2.3 million people Are

long-distAnce cAregivers, living An hour

or more from their cAre recipient.

53

disease or a related condition. Travel times between

those 404 caregivers and their care recipients are

shown in Figure 13. Nine percent of caregivers lived

two or more hours away from the care recipient, and

6 percent lived one to two hours away.(141)

On the basis of these findings and the estimate that

morethan15.4millionpeopleintheUnitedStates

are caregivers for someone who has Alzheimer’s

diseaseorotherdementia(seeCaregivingsection),

we estimate that about 2.3 million of those caregivers

live at least one hour away from the care recipient.

As discussed below, the types and amount of care

these individuals provide vary greatly.

2013 Alzheimer’s Disease Facts and Figures Special Report: Long-Distance Caregivers

CreatedfromdatafromtheNationalAllianceforCaregivingandAARP.(141)

Within 20 minutes, 47%

In the caregiver’s home, 23%

20 minutes to 1 hour, 14%

2 or more hours, 9%

1 to 2 hours, 6%

FIGURe 13 TRAVeL TIMeS BeTWeeN CAReGIVeRS AND CARe ReCIPIeNTS FOR CAReGIVeRS OF PeOPLe WhO hAVe ALzheIMeR‘S DISeASe OR A ReLATeD CONDITION

•• • • •

Muchofwhatisknownaboutlong-distancecaregivers

comes from studies in which the care recipient was an

older person who needed assistance to perform daily

activities because of cognitive or physical impairments.

Most studies were not exclusive to caregivers for

someone with dementia. Nevertheless, in key studies

about 30 percent of caregivers reported that the care

recipient had Alzheimer’s disease or a related

condition.(229) Therefore, it is reasonable to expect that

the results of those key studies apply to caregivers for

people with dementia. In some cases, findings specific

to caregivers of people with Alzheimer’s disease and

other dementias are available, and the findings have

been included in this Special Report.

definition And prevAlence

Studiesoflong-distancecaregivershavedifferedwith

respecttohowtheydefine“long-distance,”buta

common definition is one in which the caregiver lives

at least one or two hours away from the care recipient.

A2009reportfromtheNationalAllianceforCaregiving

andAARP(NAC/AARP)(229) compiled information from

1,480caregiversofadultsage18orolderwhoneeded

assistancewithself-careintheUnitedStates.Inthat

report, 9 percent of caregivers lived two or more hours

away from the care recipient and 4 percent lived

one to two hours away. The remainder lived less than

one hour away.

AsubanalysisoftheNAC/AARPstudywasperformed

in which caregivers were included only if they provided

care for someone 50 or older who had Alzheimer’s

This Special Report describes the experiences and needs of a specific typeofcaregiver:long-distancecaregivers—thosewhocareforalovedonewholivesfaraway.Itdescribesthecharacteristicsoflong-distance caregivers, their needs, the barriers they encounter, how the caregiving situation affects them and efforts that have been made to alleviate the caregiving burden they experience. These issues have received little attention but are the source of increasing concern.

54

fActors influencing geogrAphic sepArAtion

AsnotedintheCaregivingsection,mostcaregiversfor

people with dementia are relatives of the care

recipient.Inthesubanalysisofthe2009NAC/AARP

survey, 79 percent of caregivers for people with

dementiawerecaringfortheirparent,parent-in-law,

grandparentorgrandparent-in-law.(141)

Becausesomanycaregiversareadescendant(or

descendant-in-law)ofthecarerecipient,itis

worthwhile exploring the factors that influence

geographic separation between the places of

residence of children and their parents. Several studies

have done so.(230-232) The two strongest factors

affecting geographic separation are:(230-232)

•Education levels of parents and children. When

parents or their adult children have many years of

formal education, they tend to live farther apart than

those who have fewer years of formal education.

•Number of children.Parentswhohavemany

adult children are more likely to have one child who

lives nearby than parents who have fewer children.

Other factors affecting geographic separation of

parents and children include:(230-232)

•Age. Young adult children tend to live closer to their

parentsthanmiddle-agechildren.Parentsolderthan

80tendtoliveclosertotheirchildrenthanparents

youngerthan80.

•Income.Childrenwithhigherincomestendto

live farther from their parents than children with

lower incomes.

•Children’s family size.Childrenwithlargefamilies

of their own tend to live farther from their parents

than children who have small families.

•Geography.Parentswholiveinruralareastendto

live farther from their children than parents who live

inurbanareas.Childrenorparentswholiveinthe

westernUnitedStatestendtolivefartherfrom

each other than those who live in the eastern part of

the country.

•Geographic mobility.Parentsorchildrenwhohave

an extensive history of geographic mobility tend to

live farther from each other than those who have less

history of geographic mobility.

The gender of adult children does not strongly

influence geographic separation from their parents,

even though daughters are more likely to be caregivers

than sons.

The cited studies were not restricted to children who

werecaregivers.However,inatleastonestudythe

health and disability levels of parents did not strongly

influence geographic separation between them and

their adult children.(231) Therefore, it is reasonable to

expect that these same factors influence geographic

separation when adult children are caregivers for their

parents. Indeed, small studies specific to caregivers

havefoundthatlong-distancecaregivers,onaverage,

are more educated, more affluent and more likely to be

married than local caregivers.(141,233-236)

roles

Caregiversforpeoplewithdementiaperformavariety

of caregiving tasks, and each caregiving situation is

unique. In some studies, unpaid caregivers are

categorized into two groups: primary caregivers and

secondary caregivers. In most of the studies cited

here, secondary caregivers were those who identified

themselves as such; that is, they recognized that

another person was the primary caregiver.

Primarycaregiversofpeoplewhohavedementiaare

more likely than secondary caregivers to help with

essential activities such as dressing, personal hygiene,

feeding, movement and toileting (activities of daily

Special Report: Long-Distance Caregivers 2013 Alzheimer’s Disease Facts and Figures

55

living;ADLs).Primarycaregiversmayalsohelpwith

tasks that are less essential for basic functioning but

thathelpthecarerecipientliveindependently—such

tasks include housework, managing medications,

shopping, managing money and providing

transportation (instrumental activities of daily living;

IADLs). Secondary caregivers are more likely to help

with IADLs than ADLs.

In a nationwide survey conducted in 2004 by the

MetLifeMatureMarketInstitute,23percentoflong-

distance caregivers reported that they were the primary

or only caregiver for their care recipient.(233)IntheNAC/

AARPsurveys,thepercentageoflong-distance

caregivers who identified themselves as the primary

caregiver has varied from 11 percent (2004) to

35 percent (2009).(141, 235) Another study of caregivers for

people with dementia in the Los Angeles area found

that19percentoflong-distancecaregiversconsidered

themselves the primary caregiver, whereas 65 percent

of local caregivers did so.(237) From these studies,

weestimatethat,amonglong-distancecaregivers

for people with dementia, about one in five is a

primary caregiver.

Despitethefactthatmostlong-distancecaregivers

consider themselves secondary caregivers, the MetLife

study found that:(238)

•72percentoflong-distancecaregivershelpedthecare

recipient perform IADLs.

•Long-distancecaregiversspentanaverageof

3.4 hours per week arranging services for the care

recipient and another four hours per week checking on

the care recipient or monitoring care.

•Almost40percentoflong-distancecaregivers

reported that they helped the care recipient perform

ADLs.

•Onaverage,long-distancecaregiversspentabout

22 hours per month helping with IADLs and about

12 hours per month helping with ADLs.

unique chAllenges

Long-distancecaregiverswhoaretheprimary

caregiver have the same needs as local primary

caregivers,butlong-distancecaregivershavethe

added burden of having to travel more than an hour to

perform most of their caregiving tasks.(237)Predictably,

long-distancecaregiversaremorelikelythanlocal

caregivers to report distance as a barrier to

performing their caregiving tasks.(236,238)

Coordinating Care

Long-distancecaregivers,especiallythosewhoare

secondary caregivers, frequently assume the role of

coordinatorsofcare—workingtoassisttheprimary

caregiver by finding, coordinating and monitoring the

recipient’s formal care and social services.(237, 239)

Long-distancecaregiverswhoareprimarycaregivers

mayhavetotakeonmultipleroles—providingdirect

care by helping with ADLs and IADLs as well as

coordinating formal health care and social services.

Whileperformingthesetasks,long-distance

caregivers often report difficulties in finding services

available in the care recipient’s community and in

monitoring service providers.(236) These tasks can be

especially difficult when the care recipient lives in

a rural area.

Assessing the Care Recipient’s Condition and Needs

Long-distancecaregiversalsoreportedgreater

difficulty than local caregivers in obtaining information

about the care recipient.(236-237) Specifically, many

long-distancecaregiversreportthatcarerecipients

either downplay or exaggerate their condition and

needs.Asaconsequence,long-distancecaregivers

may be less able to gauge the care recipient’s needs.(240)

Similarly,long-distancecaregivershavedifficulty

obtaining accurate information about the recipient’s

condition from local caregivers or neighbors.

Communicating with health Care Providers

Long-distancecaregiversmaynotbeavailableto

accompany the care recipient to health care visits,

especially when those visits are unexpected.

2013 Alzheimer’s Disease Facts and Figures Special Report: Long-Distance Caregivers

56

Furthermore,long-distancecaregiversoftenfind

it more difficult than local caregivers to communicate

with health care providers, who may assume that the

long-distancecaregiverisnotanimportantcontact

or is less involved in caregiving. These barriers make

itdifficultforlong-distancecaregiverstoacquire

accurate information about the care recipient’s health

status, in turn making it difficult for these caregivers

to assist in making health care decisions.(237, 239)

Family Strain and Disagreements with Siblings

Although many of the effects of caregiving are

commontolong-distancecaregiversandlocal

caregivers,long-distancecaregiversreporthigherrates

of family disagreement.(237) Sources of these problems

can vary, but often include disagreements with siblings

about caregiving decisions and resentment from local

caregiversthatthelong-distancecaregiversarenot

more helpful.(236-237,241)

Psychological Distress

Insomestudies,long-distancecaregiversreported

higher rates of psychological distress than local

caregivers, even though local caregivers were more

likely to feel overwhelmed by their caregiving

responsibilities.(237)Psychologicaldistressamong

long-distancecaregiversmayarisefromdifficultiesin

ascertaining the care recipient’s condition and needs,

andthefactthatlong-distancecaregiversare

frequently asked to help during acute crises.(240) Some

long-distancecaregiversmayalsoexperiencefeelings

ofregretorremorseowingtoself-assessmentsthat

distance has restricted their caregiving capacity.(242)

employment

About 60 percent of caregivers for people with

dementiaareemployedeitherpart-timeorfull-time,(141)

andlong-distancecaregivershavesimilarratesof

employment.(233, 242) Many caregivers miss work and

usevacationorsickdaysforcaregiving.Long-distance

caregivers experience even greater disruptions in their

employment because of the time required to travel to

where the care recipient lives.(233,237-238)

Financial Burden

Giventhatlocalcaregiversaremuchmorelikelytobe

primarycaregiversthanlong-distancecaregivers,(141)

it is not surprising that local caregivers provide

significantlymorehoursofcareonaveragethanlong-

distance caregivers.(237) Thus the uncompensated

economic value of care provided by local caregivers is

likelytogreatlyexceedthatoflong-distancecaregivers.

Nevertheless,long-distancecaregivershavesignificantly

higherannualout-of-pocketexpensesforcare-related

costs than local caregivers.(233, 243) In one nationwide

surveypublishedin2007,long-distancecaregivershad

annualout-of-pocketexpensesof$9,654comparedwith

$5,055 for local caregivers (in 2012 dollars).(243), A20

These expenses included the costs of travel as well as

telephone bills, paying for hired help and other expenses

associatedwithlong-distancecaregiving.(243)

interventions

Support for Long-Distance Caregivers

With the growth of the Web, an increasing number

ofonlineandcomputer-aidedprogramshavebeen

developedtoprovideassistancetolong-distance

caregivers. Whether a program is implemented online,

via telephone or in person, it should reflect the range of

supportandinformationneededbylong-distance

caregivers, such as:

•Accesstoaprofessionalfamilyconsultantwhocanact

asaliaisonbetweencarerecipientsandlong-distance

care providers, and who can help alleviate family

disagreements.

•AccesstoprintorWeb-basedelder-careresource

guides for the area in which the care recipient lives.

•Accesstoinformationaboutelder-careattorneys

and financial planners in the area in which the care

recipient lives.

•Forbothlong-distanceandothercaregivers,assistance

in developing a comprehensive safety plan for the care

recipient that can be accessed and implemented by

bothlocalandlong-distancecaregivers.

•Helpwithcaringforanindividualwholivesalone.

Special Report: Long-Distance Caregivers 2013 Alzheimer’s Disease Facts and Figures

57

Technology

Several caregiving advocacy organizations have

issuedcallstousetechnologytoassistlong-distance

caregivers.TheNationalResearchCouncilofthe

U.S.NationalAcademiesconvenedtheWorkshop

on Technology for Adaptive Aging in 2003 and

outlined research priorities for the development of

technological devices to assist older adults, including

those with cognitive or physical impairments.(244)

The Workshop report identified core technologies in

various stages of development and how they could

help aging people remain independent, as well as help

their caregivers monitor the care recipient and provide

care and assistance when needed. Such technologies

include wireless broadband networks to connect care

recipients and caregivers, biosensors and diagnostic

tools, activity sensors, information processing systems

to detect changes in health status based on sensor

input, displays and actuators to assist in using

appliances and home controls, artificial intelligence

devices and systems that act as personal assistants

and coaches, adaptive interfaces that allow impaired

people to perform household tasks, and other devices

and tools. Technological innovations may offer the

potential to increase the connectedness of caregivers

and care recipients and alleviate some of the

burdenofcaregiving,includingtheburdenoflong-

distance caregiving.(238,245-248) Additional research is

neededontheuseoftechnologiestoassistlong-

distance caregivers.

trends

AsdescribedinthePrevalencesection,thenumber

and percentage of Americans who have Alzheimer’s

disease and other dementias are expected to increase

dramaticallyincomingdecades.Commensuratewith

this increase in prevalence are expected increases in

the number and percentage of Americans who are

caregivers for older people who have dementia or

other disabilities.(137)

Some have predicted that increases in geographic

mobilityintheUnitedStateswillleadtoevengreater

increases in the percentage of caregivers who live far

away from their care recipient.(236)However,thereis

not widespread agreement that geographic mobility

hasbeenincreasing.Anextensiveanalysisoflong-

termtrendsingeographicmobilityintheUnitedStates

concluded that geographic mobility rates actually

declined between the 1950s and early 2000s among

all age groups.(249)

Studies attempting to determine the percentage of

caregiverswhoarelong-distancecaregivershavenot

shown a consistent increase. Two studies showed

modestincreasesduringthe1980sand1990s,(250-251)

but another study found a modest decrease in recent

years (2004 to 2009).(229)However,evenifthe

percentageoflong-distancecaregiversisnot

increasing, their absolute number is likely to increase

along with the number of all caregivers required to

care for increasing numbers of older people who have

disabilities, including Alzheimer’s disease and

other dementias.

conclusions

About2.3millionpeopleintheUnitedStatesare

caregivers for a person with Alzheimer’s disease or

other dementia who lives at least one hour away.

Althoughmostofthoselong-distancecaregiversare

secondary caregivers, about 1 in 5 is a primary

caregiver, about 7 in 10 help the care recipient with

IADLs and about 4 in 10 help with ADLs. While

long-distancecaregiversmayspendlesstimehelping

thecarerecipientthanlocalcaregivers,long-distance

caregivershavehigherout-of-pocketexpenseson

average, experience greater challenges assessing the

care recipient’s condition and needs, report more

difficulty communicating with health care providers,

and often experience higher levels of psychological

distress and family discord arising from their caregiving

roles. Thus, support programs tailored to the needs of

long-distancecaregiversareneededtoaddressthe

particular challenges they encounter.

2013 Alzheimer’s Disease Facts and Figures Special Report: Long-Distance Caregivers

58 Appendices 2013 Alzheimer’s Disease Facts and Figures

A1. Number of Americans age 65 and older with Alzheimer’s disease for 2013: The number 5 million is from published prevalence estimatesbasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP)andpopulationestimatesfromthe2010U.S.Census.SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Availableatwww.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonline before print, Feb. 6, 2013. The estimates of Alzheimer’s prevalenceintheUnitedStatesreportedinpreviousFacts and Figures reports come from an older analysis using the same methods butolderdatafromCHAPanddatafromthe2000U.S.Census. SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchNeurol2003;60:1119–22.

A2. ProportionofAmericansage65andolderwithAlzheimer’sdisease: The 11 percent is calculated by dividing the estimated number of people age 65 and older with Alzheimer’s disease (5million)bytheU.S.populationage65andolderin2013,asprojectedbytheU.S.CensusBureau(44.2million)=11percent.Elevenpercentisthesameasoneinnine. A3. PercentageoftotalAlzheimer’sdiseasecasesbyagegroups: Percentagesforeachagegrouparebasedontheestimated200,000under 65, plus the estimated numbers (in millions) for people 65 to 74 (0.7),75to84(2.3),and85+(2.0)basedonprevalenceestimatesforeachagegroupandincidencedatafromtheChicagoHealthandAgingProject(CHAP).SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Availableatwww.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint,Feb.6,2013.Percentagesdonottotal100 due to rounding.

A4. DifferencesbetweenCHAPandADAMSestimatesforAlzheimer’s disease prevalence: The Aging, Demographics, and Memory Study (ADAMS) estimates the prevalence of Alzheimer’s diseasetobelowerthandoestheChicagoHealthandAgingProject(CHAP),at2.3millionAmericansage71andolderin2002.SeePlassmanBL,LangaKM,FisherGG,HeeringaSG,WeirDR,OftedalMB,etal.PrevalenceofdementiaintheUnitedStates:TheAging,Demographics, and Memory Study. Neuroepidemiology 2007;29 (1–2):125–32.[NotethattheCHAPestimatesreferredtointhisendnotearefromanearlierstudyusing2000U.S.Censusdata. SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchNeurol2003;60:1119–22.]Ata2009conference convened by the National Institute on Aging and the Alzheimer’s Association, researchers determined that this discrepancy was mainly due to two differences in diagnostic criteria: (1) a diagnosis of dementia in ADAMS required impairments in daily functioning and (2) people determined to have vascular dementia in ADAMS were not also counted as having Alzheimer’s, even if they exhibited clinical symptoms of Alzheimer’s. See Wilson RS, Weir DR, LeurgansSE,EvansDA,HebertLE,LangaKM,etal.Sourcesofvariability in estimates of the prevalence of Alzheimer’s disease in the UnitedStates.AlzheimersDement2011;7(1):74–9.Becausethemorestringent threshold for dementia in ADAMS may miss people with mildAlzheimer’sdiseaseandbecauseclinical-pathologicstudieshave shown that mixed dementia due to both Alzheimer’s and vascularpathologyinthebrainisverycommon(seeSchneiderJA,ArvanitakisZ,LeurgansSE,BennettDA.Theneuropathologyofprobable Alzheimer’s disease and mild cognitive impairment. Ann Neurol2009;66(2):200–8),theAssociationbelievesthatthelarger CHAPestimatesmaybeamorerelevantestimateoftheburdenofAlzheimer’sdiseaseintheUnitedStates.

end notes

A5. Number of women and men age 65 and older with Alzheimer’s diseaseintheUnitedStates: The estimates for the number of U.S.women(3.2million)andmen(1.8million)age65andolderwithAlzheimer’sin2013isfromunpublisheddatafromtheChicagoHealthandAgingProject(CHAP).Foranalyticmethods,seeHebertLE, WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseinthe UnitedStates(2010-2050)estimatedusingthe2010Census. Neurology. Available at www.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint, Feb. 6, 2013.

A6. Number of seconds for the development of a new case of Alzheimer’s disease: Although Alzheimer’s does not present suddenly like stroke or heart attack, the rate at which new cases occur can be computedinasimilarway.The68secondsnumberiscalculatedbydividing the number of seconds in a year (31,536,000) by the number of new cases in a year. One study estimated that there would be 454,000 newcasesin2010and491,000newcasesin2020.SeeHebertLE,BeckettLA,ScherrPA,EvansDA.AnnualincidenceofAlzheimerdiseaseintheUnitedStatesprojectedtotheyears2000through2050.AlzheimerDisAssocDisord2001;15:169–73.TheAlzheimer’sAssociationcalculated that the incidence of new cases in 2012 would be 461,400 by multiplyingthe10-yearchangefrom454,000to491,000(37,000)by0.2(for the number of years from 2010 to 2012 divided by the number of yearsfrom2010to2020),addingthatresult(7,400)totheHebertetal.(2001)estimatefor2010(454,000)=461,400.Thenumberofseconds inayear(31,536,000)dividedby461,400=68.3seconds,roundedto 68seconds.Usingthesamemethodofcalculationfor2050,31,536,000dividedby959,000(fromHebertetal.,2001)=32.8seconds,rounded to 33 seconds.

A7. CriteriaforidentifyingsubjectswithAlzheimer’sdiseaseandotherdementias in the Framingham Study:Startingin1975,nearly2,800people from the Framingham Study who were age 65 and free of dementia were followed for up to 29 years. Standard diagnostic criteria (DSM-IVcriteria)wereusedtodiagnosedementiaintheFraminghamStudy,but,inaddition,thesubjectshadtohaveatleast“moderate”dementia according to the Framingham Study criteria, which is equivalent toascoreof1ormoreontheClinicalDementiaRating(CDR)Scale,andthey had to have symptoms for six months or more. Standard diagnostic criteria(theNINCDS–ADRDAcriteriafrom1984)wereusedtodiagnoseAlzheimer’s disease. The examination for dementia and Alzheimer’s diseaseisdescribedindetailinSeshadriS,WolfPA,BeiserA,AuR,McNulty K, White R, et al. Lifetime risk of dementia and Alzheimer’s disease: The impact of mortality on risk estimates in the Framingham Study.Neurology1997;49:1498–504.

A8.Number of baby boomers who will develop Alzheimer’s disease and other dementias: The numbers for remaining lifetime risk of Alzheimer’s disease and other dementias for baby boomers were developed by the Alzheimer’s Association by applying the data provided to the Association onremaininglifetimeriskbyAlexaBeiser,Ph.D.;SudhaSeshadri,M.D.;RhodaAu,Ph.D.;andPhilipA.Wolf,M.D.,fromtheDepartmentsofNeurologyandBiostatistics,BostonUniversitySchoolsofMedicineandPublicHealth,toU.S.Censusdata.

59 2013 Alzheimer’s Disease Facts and Figures Appendices

A9. State-by-stateprevalenceofAlzheimer’sdisease:Thesestate-by-stateprevalencenumbersarebasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP),projectedtoeachstate’spopulation,withadjustmentsforstate-specificgender,yearsofeducation,raceandmortality.SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.State-specificprojectionsthrough2025ofAlzheimer’sdiseaseprevalence. Neurology 2004;62:1645. The numbers in Table 2 are found in online material related to this article, available at http://www.neurology.org/content/62/9/1645.extract. These numbers do not add up exactly to the reported estimate of the total number of Americans withAlzheimer’sdisease(seeEndNoteA1)becausetheycomefromslightlydifferentdatasources;thestate-by-statedatauses2000U.S.Censusdata.

A10. TheprojectednumberofpeoplewithAlzheimer’sdiseasecomesfromtheCHAPstudy:SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Availableatwww.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint,Feb.6,2013.Otherprojectionsaresomewhatlower(seeBrookmeyerR,GrayS,KawasC.ProjectionsofAlzheimer’sdiseaseintheUnitedStatesandthepublichealthimpactofdelayingdiseaseonset.AmJPublicHealth1998;88(9):1337–42)becausetheyreliedonmore conservative methods for counting people who currently have Alzheimer’s disease.A4 Nonetheless, these estimates are statistically consistentwitheachother,andallprojectionssuggestsubstantialgrowth in the number of people with Alzheimer’s disease over the coming decades.

A11. Projectednumberofpeopleage65andolderwithAlzheimer’sdisease in 2025: The number 7.1 million is based on a linear extrapolationfromtheprojectionsofprevalenceofAlzheimer’sfortheyears2020(5.8million)and2030(8.4million)fromCHAP.SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Available at www.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint, Feb. 6, 2013.

A12. PrevioushighandlowprojectionsofAlzheimer’sdiseaseprevalence in 2050:Thelatestprojectionsprovidedbythe U.S.Censusdonotincludehighandlowseriesbasedondifferentpredictions about future changes to the population. Therefore, a high andlowrangefortheprojectiontotheyear2050wasnotavailableforthemostrecentanalysisofCHAPdata.SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Availableatwww.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint,Feb.6,2013.TheprevioushighandlowprojectionsindicatethattheprojectednumberofAmericanswith Alzheimer’s in 2050 age 65 and older will range from 11 to 16 million.SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchNeurol2003;60:1119–22.

A13. Deaths with Alzheimer’s disease: The estimates for the number of Americans dying with Alzheimer’s disease, 400,000 in 2010 and 450,000 in 2013, were provided to the Alzheimer’s Association by LiesiHebertasunpublishedresultsfromherstudy.SeeHebertLE,WeuveJ,ScherrPA,EvansDA.Alzheimer’sdiseaseintheUnitedStates(2010-2050)estimatedusingthe2010Census.Neurology.Available at www.neurology.org/content/early/2013/02/06/WNL.0b013e31828726f5.abstract.Publishedonlinebeforeprint, Feb. 6, 2013.

A14. Number of family and other unpaid caregivers of people with Alzheimer’s and other dementias: To calculate this number, the Alzheimer’sAssociationstartedwithdatafromtheBehavioralRiskFactorSurveillanceSystem(BRFSS).In2009,theBRFSSsurveyaskedrespondentsage18andoverwhethertheyhadprovidedanyregularcare or assistance during the past month to a family member or friend whohadahealthproblem,long-termillnessordisability.Todeterminethe number of family and other unpaid caregivers nationally and by state, the proportion of caregivers nationally and for each state from the 2009 BRFSS(asprovidedbytheCentersforDiseaseControlandPrevention,HealthyAgingProgram,unpublisheddata)wasappliedtothenumber ofpeopleage18andoldernationallyandineachstatefromtheU.S.CensusBureaureportforJuly2012.Availableatwww.census.gov/popest/data/datasets.html.AccessedonJan.7,2013.Tocalculatetheproportion of family and other unpaid caregivers who provide care for a person with Alzheimer’s or other dementias, the Alzheimer’s Association used data from the results of a national telephone survey conductedin2009fortheNationalAllianceforCaregiving(NAC)/AARP(NationalAllianceforCaregiving,CaregivingintheU.S.,November2009.Availableathttp://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf).TheNAC/AARPsurveyaskedrespondentsage18andoverwhethertheywereprovidingunpaidcareforarelativeorfriendage18orolderorhadprovidedsuchcareduringthepast 12 months. Respondents who answered affirmatively were then asked about the health problems of the person for whom they provided care. In response, 26 percent of caregivers said that: (1) Alzheimer’s or other dementias was the main problem of the person for whom they provided care, or (2) the person had Alzheimer’s or other mental confusion in addition to his or her main problem. The 26 percent figure was applied to the total number of caregivers nationally and in each state, resulting in a total of 15,409,609 Alzheimer’s and dementia caregivers.

A15. Alzheimer’sAssociation2010WomenandAlzheimer’sPoll: This pollcontacted3,118adultsnationwidebytelephonefromAug.25toSept. 3, 2010. Telephone numbers were randomly chosen in separate samples of landline and cell phone exchanges across the nation, allowing listed and unlisted numbers to be contacted, and multiple attempts were made to contact each number. Within households, individuals were randomly selected. Interviews were conducted in EnglishandSpanish.Thesurvey“oversampled”African-AmericansandHispanics,selectedfromU.S.Censustractswithhigherthan8percentconcentration of each group. It also included an oversample of Asian-AmericansusingalistedsampleofAsian-Americanhouseholds.Thecombinedsamplesinclude:2,295white,non-Hispanic;326African-American;309Hispanic;305Asian-American;and135respondentsofanotherrace.Caseswereweightedtoaccountfordifferential probabilities of selection and to account for overlap in the landlineandcellphonesamplingframes.ThesamplewasadjustedtomatchU.S.Censusdemographicbenchmarksforgender,age,education, race/ethnicity, region and telephone service. The resulting interviewscompriseaprobability-based,nationallyrepresentativesampleofU.S.adults.Thisnationalsurveyincluded202caregiversofpeople with Alzheimer’s and other dementias. This was supplemented with 300 interviews from a listed sample of caregivers of people with Alzheimer’s for a total of 502 caregiver interviews. A caregiver was definedasanadultoverage18who,inthepast12months,providedunpaid care to a relative or friend age 50 or older with Alzheimer’s or otherdementias.Theweightofthecaregiversampleadjustedall502caregiver cases to the weighted estimates for gender and race/ethnicity derived from the base survey of caregivers. Questionnaire design and interviewingwereconductedbyAbtSRBIofNewYork.SusanPinkusofS.H.PinkusResearchandAssociatescoordinatedthepollingandhelpedin the analysis of the poll data.

60 Appendices 2013 Alzheimer’s Disease Facts and Figures

A16. Number of hours of unpaid care: To calculate this number, theAlzheimer’sAssociationuseddatafromafollow-upanalysisofresultsfromthe2009NAC/AARPnationaltelephonesurvey(dataprovidedundercontractbyMatthewGreenwaldandAssociates,Nov. 11, 2009). These data show that caregivers of people with Alzheimer’s and other dementias provided an average of 21.9 hours a week of care, or 1,139 hours per year. The number of family and other unpaid caregivers (15,409,609)A14 was multiplied by the averagehoursofcareperyear,whichtotals17,548,462,657hours of care.

A17. Value of unpaid caregiving: To calculate this number, the Alzheimer’sAssociationusedthemethodofAmoetal.SeeAmoPS,LevineC,MemmottMM.Theeconomicvalueofinformalcaregiving.HealthAff1999;18:182–8.Thismethodusestheaverageofthefederal minimum hourly wage ($7.25 in 2012) and the mean hourly wageofhomehealthaides($17.40inJuly2012)[seeU.S.DepartmentofLabor,BureauofLaborStatistics.Employment,hours,andearningsfromtheCurrentEmploymentStatisticsSurvey.Series10-CEU6562160008,HomeHealthCareServices(NAICScode6216),AverageHourlyEarnings,July2012.Availableat www.bls.gov/ces. Accessed on Dec. 7, 2012]. The average is $12.33, which was multiplied by the number of hours of unpaid care(17,548,462,657)A16 to derive the total value of unpaid care ($216,372,544,560).

A18.HigherhealthcarecostsofAlzheimer’scaregivers: This figure is basedonamethodologyoriginallydevelopedbyBrentFulton,Ph.D.,for The Shriver Report: A Woman’s Nation Takes on Alzheimer’s.(252) A survey of 17,000 employees of a multinational firm based in the UnitedStatesestimatedthatcaregivers’healthcarecostswere 8percenthigherthannon-caregivers’.SeeAlbertSM,SchulzR. TheMetLifeStudyofWorkingCaregiversandEmployerHealthCareCosts,NewYork,N.Y.:MetLifeMatureMarketInstitute,2010. Todeterminethedollaramountrepresentedbythat8percentfigurenationallyandineachstate,the8percentfigureandtheproportionofcaregiversfromthe2009BehavioralRiskFactorSurveillanceSystemA14wereusedtoweighteachstate’scaregiverandnon-caregiver per capita personal health care spending in 2009, inflated to2012dollars.SeeCentersforMedicareandMedicaidServices,CenterforStrategicPlanning,HealthExpendituresbyStateofResidence1991-2009.Availableathttp://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and- Reports/NationalHealthExpendData/NationalHealthAccountsStateHealthAccountsResidence.html.Thedollaramountdifferencebetween the weighted per capita personal health care spending of caregiversandnon-caregiversineachstate(reflectingthe8percenthigher costs for caregivers) produced the average additional health care costs for caregivers in each state. Nationally, this translated into an average of $592. The amount of the additional cost in each state, whichvariedbystatefromalowof$436inUtahtoahighof$902intheDistrictofColumbia,wasmultipliedbythetotalnumberofunpaid Alzheimer’s and dementia caregivers in that stateA14 to arrive at that state’s total additional health care costs of Alzheimer’s and other dementia caregivers as a result of being a caregiver. The combinedtotalforallstateswas$9,121,120,080.Fultonconcludedthat this is “likely to be a conservative estimate because caregiving for people with Alzheimer’s is more stressful than caregiving for most people who don’t have the disease.”(252)

A19. Lewin Model on Alzheimer’s and dementia and costs: These numbers come from a model created for the Alzheimer’s Association byTheLewinGroup,modifiedtoreflectmorerecentestimatesandprojectionsoftheprevalenceofAlzheimer’sdisease.(83) The model estimatestotalpaymentsforcommunity-basedhealthcareservicesusingdatafromtheMedicareCurrentBeneficiarySurvey(MCBS).Themodelwasconstructedbasedon2004MCBSdata;thosedatahavebeenreplacedwiththemorerecent2008MCBSdata.A21 Nursing facility care costs in the model are based on The Lewin Group’sLong-TermCareFinancingModel.Moreinformationonthemodel,itslong-termprojectionsanditsmethodologyisavailableatwww.alz.org/trajectory.

A20. All cost estimates were inflated to year 2012 dollars using the ConsumerPriceIndex(CPI):AllUrbanConsumersseasonallyadjustedaveragepricesformedicalcareservices.Therelevantitemwithin medical care services was used for each cost element (e.g.,themedicalcareservicesitemwithintheCPIwasusedtoinflate total health care payments; the hospital services item within theCPIwasusedtoinflatehospitalpayments;thenursinghomeandadultdayservicesitemwithintheCPIwasusedtoinflatenursinghome payments).

A21. MedicareCurrentBeneficiarySurveyReport: These data come fromananalysisoffindingsfromthe2008MedicareCurrentBeneficiarySurvey(MCBS).TheanalysiswasconductedfortheAlzheimer’sAssociationbyJulieBynum,M.D.,M.P.H.,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicyResearch.TheMCBS,acontinuoussurveyofanationallyrepresentative sample of about 16,000 Medicare beneficiaries, is linkedtoMedicarePartBclaims.ThesurveyissupportedbytheU.S.CentersforMedicareandMedicaidServices(CMS).Forcommunity-dwellingsurveyparticipants,MCBSinterviewsareconductedinperson three times a year with the Medicare beneficiary or a proxy respondent if the beneficiary is not able to respond. For survey participants who are living in a nursing home or another residential care facility, such as an assisted living residence, retirement home or along-termcareunitinahospitalormentalhealthfacility,MCBSinterviews are conducted with a nurse who is familiar with the survey participant and his or her medical record. Data from the MCBSanalysisthatareincludedin 2013 Alzheimer’s Disease Facts and Figures pertain only to Medicare beneficiaries age 65 and older. ForthisMCBSanalysis,peoplewithdementiaaredefinedas:

•Community-dwellingsurveyparticipantswhoansweredyes totheMCBSquestion,“HasadoctorevertoldyouthatyouhadAlzheimer’sdiseaseordementia?”Proxyresponsestothisquestion were accepted.

•Surveyparticipantswhowerelivinginanursinghomeorotherresidential care facility and had a diagnosis of Alzheimer’s disease or dementia in their medical record.

•SurveyparticipantswhohadatleastoneMedicareclaimwithadiagnostic code for Alzheimer’s disease or other dementias in 2008:TheclaimcouldbeforanyMedicareservice,includinghospital, skilled nursing facility, outpatient medical care, home health care, hospice or physician, or other health care provider visit. The diagnostic codes used to identify survey participants with Alzheimer’s disease and other dementias are 331.0, 331.1, 331.11, 331.19,331.2,331.7,331.82,290.0,290.1,290.10,290.11,290.12,290.13, 290.20, 290.21, 290.3, 290.40, 290.41, 290.42, 290.43, 291.2, 294.0, 294.1, 294.10 and 294.11.

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The Alzheimer’s Association acknowledges the

contributionsofJosephGaugler,Ph.D.,BryanJames,Ph.D.,

TriciaJohnson,Ph.D.,KenScholz,Ph.D.,andJennifer

Weuve,M.P.H.,Sc.D.,inthepreparationof2013 Alzheimer’s

Disease Facts and Figures.

68

Alzheimer’s Association National Office 225 N. Michigan Ave., Fl. 17 Chicago, IL 60601-7633

Alzheimer’s Association Public Policy Office 1212 New York Ave., N.W., Suite 800 Washington, DC 20005-6105

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The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Our vision is a world without Alzheimer’s disease®.